Hi Lauren, Just to let you know Im a 34 year with MS who is also JC positive. I was as devastated as you to get the news. This is my first time to watch any of your videos as like you I almost forget I have an illness because of how TYSABRI has helped me. I too decided to stay on the drug. My thought on it was that if I never knew I was positive for the JC virus I would have continued on Tysabri and continue to enjoy a good quality of life! All the very best- enjoy being well!
U might want to research IRISH MOSS it will improve ur over-all health I drink it everyday and it has improved my balance. It has so many benefits,check it out.
Thank you for your response Lauren. Hope you're well. I've had my results back and I've also tested positive for JCV. Bummer! I have appt with neurologist on 23 Feb to discuss whether I should change meds and go onto Gilenya. Not sure if this is going to be a better option as I've researched it and the thought of being susceptible to ongoing infections and a chance of losing my sight is not a good thought. Has anyone here changed from Tysabri to Gilenya? I'd like to know how you went. xox
Thanks for posting. My doctor is probably going to tell me I tested positive for JCV next Thursday. I was researching to figure out what that meant and was having a hard time understanding the "medical talk" online. You explained things well and I now have a list of questions to ask my doctor when I meet with him. Absolutely staying on Tysabri though! It's the best. Ran my fourth marathon last year and I've never been happier :)
@6randomBeth I'm so happy for your! Congratulations on running in 4 marathons...WOW! I've had 54 infusions and I feel great! I wish you the very best!!
Thanks Lauren for the video, I've been on Copaxone for the last 4 years and keep having more problems and new lesions at each MRI. I met with the head of our MS Clinic here where I live and he suggested that I go on Tysabri. I recently switched to Rebif from Copaxone, and my neurologist suggested I get another opinion. So I am going to go in for the blood work to check for the JC virus. Hope that Tysabri can slow things down. I'm open to talk, have a hard time doing that.
@elkbow Good luck with everything...Copaxone and Beta Seron did not work for me and Tysabri has been the best! Even though I am JCV positive, I have never been on any other drugs aside from MS drugs so I feel very confident. I wish you the very best!!
@laurenvparrott Hi Lauren. Do you still have foot drop? I have it also, my thigh gets shocks every 12 seconds and lasts 4 seconds long, I got fitted with an AFO (Ankle Foot Orthosis), it works really well and won't allow the foot to drop.
@DHammerr The medication is called TYSABRI and is NOT a cure. It's the best medication that has worked for me and has slowed the progression of the disease.
I am at high risk of PML, but I'm not going to stop my Tysabri infusions. I know what all the risks are and I am under constant supervision so I'm good.
To me this is no more dangerous than it is getting out of bed in the morning, or going into traffic.
I dont know, maybe I'm wrong, but this is a decision I have to make and stick with.
Thank you for the video
And I agree with you, sometimes I dropfoot, but that is the only simptoms I have. I can also work a full job and go to school as usual :D
I don't know much about this topic but I do have a friend who has MS, and just got diagnosed with the JCV, but what is the PML? I know she doesn't do as much research as she should but she has also been on Tysabri for a few years now and it concerns me hearing that it raises her chances of PML. I'd like to learn more to help her out and see what else can be done if anything....Wonderful Video!
@codybear4you Thank you for your comment! PML is a rare brain infection and people are more susceptible to getting the infection if they are taking an immunosuppressant drug and test positive to the JC virus. Yet, the only things to be careful about are if the person has previously been on other immunosuppresant drugs. I hope this helps a little.
Forgot to say that I'm from Australia. Anyway, I would like to send a prayer of hope and wellness to everyone with MS and also a bith thank you to our wonderful carers. Lauren, you are an inspiration to us all. God bless you and know that because of people like you, strength is given to the rest of us. Love & hugs. Fil xox
@Filitsa4 Hello Fil! Your comment was so sweet! I'm sorry it's taken so long to respond but I'm so glad that you are doing well! Please keep me posted on everything. I'm sending you a prayer of hope and wellness!!
Had neurologist appt today and was asked to do blood test for JC Virus/PML as I have now been on Tysabri for 14 months. After diagnosis in Dec 2009, I was put on Avonex for 3 months until I developed cystitis and then put on Copaxone for 2 months until my MS symptoms got worse. Neurologist said that Tysabri would be best for me and I agree with you, I have never felt better. I'm not sure what I would do if I tested positive. I hope that I will be as strong as you whatever the verdict. :-)
Thank you so much for your encouraging, optimistic video. I've wanted to switch from Betaferon, which I've been on for 9 years (unhappily for my liver). Before that I was on Copaxone for a year and a half, but by that time I was already way past RR and getting no relief from it.
I gave blood for the JCV test yesterday. Hopefully I'll be able to start Tysabri within the next few months no matter the results of the test. My cousin has been on it for over a year and feels wonderful.
Hello Everyone. I'm here to report with joy that none of you have MS! :)
All you have to do to change your life is visit a wellness centre and have them do a test for ALL HEAVY METALS in your body. You will be shocked at the test results.
They say EVERY human has metals in their body. You can't avoid them.
Once the mercury, aluminum, and tin are out of you along with all other heavy metals you will feel like a new person and be cured of MS within days. I swear this on my own life!
Hi Lauren - My brother-in-law was on Tysabri for the last 4 years he struggled with MS before he died of PML in 2010 (he battled without remission for 14 years). It was a very rapid onset and took less than 3 months from diagnosis of brain-infection\JCV to death. He knew the risks and was under the care of an MS specialist. Real people die from the Tysabri/PML link, it is not just a warning. If only there was a clear path forward. We wish you ALL the best in your journey.
I haven't ever been on a chemotherapy drug or an immunosuppressant drug. Doc says I'm a good candidate for tysabri! Just waiting on the blood test results. I so want to take tysabri because if it could help me with just some of my (mostly invisible symptoms) symptoms I'd feel better physically and mentally. I want to go back to school! I want to be a better Mom and wife. Your smile honey gives me hope! Stay cool in those IL summers. We moved west because of the humidity.
Just found you searching for anything on PML and Tysabri. Copaxone isn't working anymore. I desperately want to go on Tysabri. I can't seem to explain what 'quality' of life means to my loved ones. Waiting for the test results...3 weeks to go. If I test negative it's a no brainer...take Tysabri. I hope I have your strength if I test positive. Can you guide me to info that would help my husband & kids understand? You've brought some hope into my life. Thank you Lauren
@nedwardo3 I'm so glad that I could help!! I don't know of a place where you can get information, but I'm sure your doctor will. I just had my 48th infusion and I'm JCV positive. Have you ever had chemotherapy or any other immunosuppressant drugs?
I tested positive for the JC Virus too and I will have my 43 infusion in September. I totally agree with you. I decided to stay on Tysabri because of quality of life. Tysabri has been a miracle theraphy for me. It wasnt an easy decision to make and I cried many tears myself. I want to wish you the very very best! Please keep us all informed.
I just got back from Vegas and was told I tested positive for JCV. I have been on Tysabri for about six years. I was on it before they pulled it off the market because of the deaths. I don't know what to do Tysabri has been wonderful for me.
Your video has given me more hope that I just might stay on Tysabri and deal with the 1 and 350 chance that I will get PML I just don't know.
@krista1963 Hello! Oh good, I'm so glad my video was helpful for you! If you've already been on Tysabri for about six years, I'm pretty sure you're in the clear. I would definitely talk to you doctor, but I wouldn't be too worried. I wish you the very best!!
Having just received my own letter with the results of my JCV test, which came back positive, I went googling and stumbled on your vid. I'm so glad to see that you decided to stay on Tysabri! I was worried that you'd quit due to a risk of 0,2% per year... =s
Those are ridiculously good odds, and having had very positive results from Tysabri myself, and knowing that not using Tysabri would mean a steady decline for sure, I'd go all in at those odds every time without blinking ;)
I was just diagnosed with MS in November, right before Thanksgiving and my 40th Birthday. I was on Copaxone for 4 months with very bad injection site reactions. When I had my follow up MRI it was discovered that my MS had worsened. My doctor said that I have so many new and active lesions that the radiologist stopped counting. Tysabri was strongly suggested but I am too scared to give it a try. I may have to go on interferon and I'm dreading that. You are so positive. I wish I was.
@alanddebfysz Hello! Trust me when I tell you that I have dreaded taking medications in the past...but medications slow the progression of the disease. Copaxone and Beta Seron did not slow my progression, but Tysabri has actually stopped my MS from progressing for the last 4 years - that's why I'm so happy with it. I wish you the very best with everything!!
I have been on Tysabri for over a year now and I got my results for the JCV test today. I tested positive which is a bit upsetting, but I am determined to stay on Tysabri as it has made such a difference to my life. Maybe I am at a higher risk of developing PML, but I know full well that if I come off this drug, I will *definitely* start relapsing at the rate I did before - so it's worth it. Thank you for your video, your positive attitude has reinforced my decision. Take care xx
Wow!! My Neuro. just told me today that I tested positive for the JC virus, I cried for about half a day. My doctor is working on what we or I can do next. I didn't know to do... I have had MS for 11 years now and it is hard at times but I am always looking on the bright side, but this is a bunch to take in.
When I got on line and heard you story about the JC virus and P.M.L. it made me feel a lot better.
@frannydont Hi Francine! Oh, I am SO HAPPY this video gave you hope! We are in the same position, and I truly believe everything will be fine! I would make sure your doctor knows your entire medical history before continuing Tysabri...have you had chemotherapy, drugs like methotrexate...etc. But I'm sure you will be fine! I just had my 47th infusion and I'm stronger than ever!! I wish you the very best!!
Lauren, I am definitely taking this experience (being tested and not having MS) and turning into something positive, this has opened my eyes to what people with MS go through, but people like you who r positive give others so much hope. In Australia there is a lot of support i think. Im doing a run for charity next weekend and they hope to raise 1/2 a mill. to support the MS Australia Society. Globally its amazing how YouTube has helped so many be empowered and support each other! Hugs from Oz!
@Heather3834 Hey! I'm so sorry for taking so long to reply. You are so sweet! Thank you for saying that! How did that run turn out? I hope well! And I hope you're feeling great!
@laurenvparrott good thanks! The run raised over 1 million for the MS Society of Australia, which is awesome! I managed to complete it, and will do it again next year but quicker :0) I am well thanks - found out I have carpel tunnel, which though annoying at night, is nothing serious. Keep up your youtube videos, I always watch them! Keep smiling hun! xx
I love this videoand i to am on tysabri and have been almost 3 years in june. I love it but please go to the fda ite and look at the number of pml patients and the number of treatments they have. i call biogen the makers of tyabri and i get numbers but not the same asbiogen, i think it is woth looking at. just to see the % of people and the% of risks. it never hurts to be well informed. God bless.
Hi Lauren, I just want to say how grateful I am for your videos. The last 3 months I have been thinking I have MS, gone through the tests and it turns out I don't but watching your videos, through the waiting period gave me strength to deal with the uncertainty and fear and inspired me! This experience has changed me forever and I will use this for good. I have made a large donation to the MS society of Australia, due in a big part to you and I hope that I can help others. You're amazing.
Hi Lauren, I just want to say how grateful I am for your videos. The last 3 months I have been thinking I have MS, gone through the tests and it turns out I don't but watching your videos, through the waiting period gave me strength to deal with the uncertainty and fear and inspired me! This experience has changed me forever and I will use this for good. I have made a large donation to the MS society of Australia, due in a big part to you and I hope that I can help others. You're amazing.
@Heather3834 Hello! I'm so sorry for the delayed response. Wow, I am so touched by what you said!! Thank you so very much!! I really hope that you're doing well, and you'll be in my prayers!!
Hi Lauren, I just want to say how grateful I am for your videos. The last 3 months I have been thinking I have MS, gone through the tests and it turns out I don't but watching your videos, through the waiting period gave me strength to deal with the uncertainty and fear and inspired me! This experience has changed me forever and I will use this for good. I have made a large donation to the MS society of Australia, due in a big part to you and I hope that I can help others. You're amazing.
CCSVI Clinic Receives Joint IRB Approval for Aftercare Protocol Study.
The joint application between Noble Hospital and CCSVI Clinic has been approved through the IEC Institutional Review Board (IRB) that will allow researchers to use patient data to study their new extended and enhanced aftercare treatment protocol. Please Call 888-419-6855 to know more about participating in the study. Log on to ccsviclinic. ca for more information. Email apply -at- ccsviclinic. ca
I was at my doctor’s office in September when he told me about the JC Virus study. He told about what it was about, and I said to him "You don't need to test me, I'm positive. He said, "we don't know that yet, we'll do the test. Guess what, I'm postive. I'm stay on Tysabri. Like you, I was on other meds, but the way I feel on Tysabri is something I don't ever want to change. When I talked to the Touch Prescribing people, I told them I don't ever want to go off Tysabri. JC Virus or not!
Ive been considering Tysabri for some months now and will pretty soon get tested for the JC virus and have to tell my doctor whether or not I will want to take it.
I have high hopes it will work as it does for you. :)
Got to do whats best for you, just make sure you are well informed. Sounds like you made a good choice & be careful. Thanks for your videos. BTW you are kinda cute ;D.
i been against tysabri u know that well im startin it can u plz look at my video on it and call me i need a friend thats goin thru it 770.733.2160 thanks
Hi Lauren, i'm newly diagnosed and trying to get my head around the different treatment options. I'm from Australia, my neuro has offered me tysabri to consider as one of my options. I look forward to your future videos to see how you're going, and you've definately given me some more questions to ask, such as if i was on tysabri can i have closer follow up, get tested for JC virus etc. Thanks so much. All these video blogs from people like yourself are so helpful for newly diagnosed ppl!
@mkmoose1 Thank you for writing from Australia! You are so smart for researching into things! When on Tysabri, the only way to have close follow up is by being completely open and honest with your physician. It's essential to be pro-active by taking note of any changes, and then conveying that to your physician. You can get tested for the JC virus if your physician is participating in the Stratify study. Please feel free to ask me questions any time!!! I wish you the best!
you are such an inspiration... i think ive watched almost all of your videos. i think i might have MS, but i dont know yet. im hoping for the best, but expecting the worst so i dont get too upset when i get the news. thank you for doing what you do.
Hello Lauren, please be strong. My wife has had MS since age 13, she is turning 20 on April 1st and has been on Tysabri since June 2009. She's had 21 infusions and will soon receive her 22nd infusion. It is very difficult cheering her up, especially when I am at work. Seeing your video's helps my wife stay positive. My wife can see that she is not the only young person going through depression and woring about PML. Please do not give up, my wife looks forward to more of your videos. =0)
@antant6970 Hello! I will not give up, I promise you! I'm really happy that my videos help your wife! I will keep fighting, and I hope your wife does the same! I wish you both the best!!
Having been diagnosed last June, I found and have followed you and Vern's video updates ever since. I, too, tested positive for JC antibodies, but my neurologist and I agree that I'll stay on Tysabri for at least a couple years. Life is full of probabilities, and I, too, am willing to "take the risk" of PML. You, both, have been and will continue to be my inspiration.
Hi Lauren -- I had the blood sample for my JC virus test taken 3 weeks ago, I hope its negative, but if it is not--- I will stay on Tysabri as well, this med is worth the risk :-) -- Lots of hugs for you, you are a star!!
Hi Lauren -- thank you so much for making this recent video about your JC virus status. Your smiling happy face always does wonders for me. I find your willingness to share your personal life and experience with MS so generous and reassuring. And I'm glad that you made the best decision for you!
hello Lauren .. my name is mo, im a fan of your youtube uploads. im still on betaferon but i think you made a brave decision for your self by continuing on tysabri despite the pml risk. so keep the good spirits high for the new year, and i hope for you the very best. > mo
Lauren we all love you... I also was tested for the jc virus but came back with indeterminate. I would be the same I would still take tysabri even if I have the jc virus. The benefits outweigh the risks for me. If it wasn't for this drug I wouldn't be walking today and my Husband and my 2 small children deserve more in life. I have now completed 16 infusions and don't plan on quitting any time soon. Lots of luv, Lauren you are a blessing to us all.
My neuro has me seeing her every 3mon with an mri every 6mon. I also told my Neuro that if it is my time to go whether it be PML or a car accident or whatever it will be my time to go. So for me taking Tysabri and the risk of pml didn't even faze me.
@micah5five Hello! You are so kind for writing such a sweet message! I agree, the benefits outweigh the risks and I think you are so caring for thinking of your family like that! I wish you the best!! Lots of love to you!!
I'm so sorry you've been in such turmoil. Don't wait to say something next time. We could have been supporting you! Of course I'm totally the pot calling the kettle black. I'm pretty silent until my crisis is over! I say you meet me in California to be liberated? I think I'm going in March. :)
@MsHopeforhealing Oh, thank you so much!! I know, I'd always be there to support you too, of course! But it's hard when you're going through a really hard time. I wish I could meet you in California! I wish you the best with the Liberation Procedure!! Let me know how everything goes!!
I am glad you are doing well, Lauren! I also tested positive for the JC virus. I have decided to stay on the drug for now. I already had my 20th Infusion and feel the best since my diagnosis! Not a single relapse while on Tysabri!! Best wishes!!
@mfgutierrez07 I had my head and neck scanned and everything was just fine no flattened/twisted arteries so for me ccsvi wouldn't work unless its in my spine. So I am also curious to know about those with the same result as mine and what Dr. Zamboni thinks. Its all confusing to me lol.
i'm just pleased you are ok my friend, i was concerned because i haven't seen a video for some time. you are in my thoughts, love to you and your family. (p.s. i sent you a message)
@tonywilde1234 Thank you so much Tony! I wrote you a message back, but as always, I love hearing from you and I hope you are having a wonderful week!! Lots of love to you!
Hi Lauren, I just wanted to say thank you for your video's! I have been watching them since my diagnosis and you have given me so much inspiration and helped me to stay positive.
I wish you all the best and hello from New Zealand!!
Hi Lauren, thanks so much for the video, I was never tested or even offered a test to see if I have the JC virus I've had 32 Tysabri infusion so far and I've never felt better I don't know if offered the test I'd take I wouldn't come of Tysabri for anything it has giving me my life back and if I did take the test and it was positive I would still stay on it I know how bad life was before Tysabri and there's no way I'd risk that again. take care and be strong all the best Mark xx
@laurenvparrott Glad I'm not the only 1 who thinks like that :). I said I'd rather live 6 months the way I am now with the Tysabri than live a life the way I was before Tysabri its giving me a second chance at life and I make the must of it and live and enjoy every moment of it. I thank god every morning I can get out of bed put my feet on the ground and walk, I couldn't even get out of bed before Tysabri. I'll keep taking it till they find a cure :)! I wish you all the best xoxox
Lauren, I think you made the right decision. There is a 100% chance you will have MS tomorrow and next year and 10 years from now, but the chances of you getting PML are miniscule (0.2%). I feel that all the talk about CCSVI is an internet phenomenon and people will be disappointed in the end, just like all the other proclaimed miracles over the years. Go with what works, as it obviously does for you......:o) o) o)
You made me smile when you said you were going to stay on Tysabri! You are doing so well on it....it is the right choice, Lauren! The odds of developing PML when on Tysabri are 1 in 1000? Or is it 1 in 10,000? How much greater is the risk when you have the JCV? Anyway, I saw the CEO of Biogen on CNBC the other day, and he is VERY happy with Tysabri, even saying the evidence shows it is the most efficacious of the DMT's! I thought of you! Ciao, Bella!
@navymuret Hey!!! Thank you so much for saying that! The odds are 1 in 1000, and I feel amazing so I don't want to stop! Yes, it is the most effective drug out there! I hope you're doing well! Ciao bello!!
Years ago I bought a motorcycle I really loved. It brought me lots of joy and I drove it for a few years before the engine developed a ticking sound I was sure spelled doom. Driving it each day I kept picturing it failing on the road. Eventually because of this growing association I didn't enjoy driving it anymore, so I sold it to a neighbor. He rode it for five years that I'm aware of and as far as I know was still riding it when I lost contact with him. Our minds can ruin what we enjoy most.
@gphx I agree with you completely!! I always try to focus on the positive, and what makes me happy. Even though I will be cautious while continuing to take Tysabri, I'm not stopping because it helps me feel amazing! Thank you so much for your story!!
@rickileeway I have considered it, but I still think it's too new. I'd like to wait until more test results have shown consistent improvements in patients. But it sure sounds exciting!!
So sorry to hear you have this extra burden to carry Lauren. This must have been such a shock. I know you will find the strength to deal with such a heavy load though. Your ability to deal with it is evident in this video............still your usual calm, happy, sweet self. :-)
@rickileeway Hello! Yes, this was a shock, but you're right - I'll find the strength to keep moving forward! You are so sweet, thank you so much for your message!! I hope you're doing well!
Wow- Lauren you are such a source of inspiration and hope! I am glad you have decided this for yourself to stick with what you’re doing, I hope that the stress of this news is somewhat leaving you! I really hope the best for you and I check YouTube daily to see if your making any new video's! I Hope you never stop doing these video's, you are helping so many people! We all need your strength- Thank you, God bless you!
@JoshHewlett Hi Josh!! You are so sweet!! Thank you very much! Yes, the stress is somewhat leaving me! I really appreciate what you wrote - thank you! I hope you are doing well! God Bless You!
Thank you so much for all your videos. You are such a source of strength for me. When I was first diagnosed, I felt like giving up. You showed me I could fight this.
Thank you so much for all your videos. You are such a source of strength for me. When I was first diagnosed, I felt like giving up. You showed me I could fight this.
Thank you so much for all your videos. You are such a source of strength for me. When I was first diagnosed, I felt like giving up. You showed me I could fight this.
Thank you so much for all your videos. You are such a source of strength for me. When I was first diagnosed, I felt like giving up. You showed me I could fight this.
Hi Lauren, when you have MS none of our choices are ever easy. It is good you were able to have this test so you know and can monitor more closely. I wish it would be made part of the protocols for Tysabri users so everyone can have the option to have such regular monitoring if they have been exposed to JCV. I don't think the test is yet available in Australia unfortunately. Have a great 2011. Kerri
@kezzcass Hi Kerri! You're right, NO choices are ever easy! I completely agree with you - I hope that this test absolutely becomes part of the protocols for Tysabri users. I hope it becomes available worldwide very soon. I hope you're having a wonderful 2011!!
I admire you for making a tough decision and following what you think is right for you despite conflicting information. Jelinek said something like 80% of people have JC activated after 18 months on Tysabri so I think you're in the majority, and the majority haven't even had the test. Good idea re monitoring your symptoms, as long as it doesn't turn into paranoia or affect your enjoyment of life. All the best to you Lauren, you're a shining light. Amanda.
@missalgernon Hi Amanda! Thank you very much for your comment! I'm hoping the increased monitoring will decrease any paranoia that I may feel! I wish you the best!
Lauren. I've missed you!! I'm sorry you've had a crappy couple of months but you certainly seem very relieved and happy now. So I'm glad you're happy and made the decision that felt best for you! You seem so energised and looking very healthy :P Love you! xx PS Let's do what we've been planning for agggges this year. ok!
I am glad that you had the testing done and are following a more intense protocol. I have many friends who have done very well on Tysabri and then other's who haven't. As you said it is a personal choice and if you find the benefit out weighs the risk then it is the right choice for you.
It seems to me and I may be wrong but the people who have been on it for such a long time seem to be doing better, like Vern. I wish you nothing but the best and a happy 2011.
I also have some friends that have done extremely well, and some who have not on Tysabri. I really appreciate what you said! Vern and I have talked and we've had a very similar experience. I hope you are doing well, and I wish you a very happy 2011!!
@laurenvparrott I am currently uploading my 5 month post CCSVI video, but I do address how upset I get when I see others attacking people for whatever choice they make on treatment. There is a pretty long rant about it in the video, but I feel it is really important that we respect each other and support. We all can have an opinion but consider what you are saying. You have no idea what kind of frame of mind a person is in and hurtful words about what they choose can be very damaging.
@tazscott14 Trust me, I do! I have been in touch with Angela and her husband Keith throughout this situation. I pray for her every day and she knows that! But just because she had an unfortunate reaction to Tysabri does not mean I will, or other patients taking it will. I wish her the very best, I've spent hours crying and praying for her, and I really hope for a positive recovery soon! But I've been on Tysabri a lot longer than she was, and I've seen amazing results. Thanks for your concern!
@laurenvparrott I guess what I am trying to say is that I lost a great deal of trust in the medical profession. It looks as though they are learning as they go. So, how safe are the trials that they conduct? They say that the trials for C.C.S.V.I. need more time, but it seems as though they did not take enough time to test Tysabri. Who knows what the future holds for those taking that med or any of these DMDs for that matter. I don't think the doctors even know. Is CURE still in the dictionary?
@tazscott14 I know exactly what you mean. I'm just as frustrated as you, however, I know how I feel and have felt for 3 years. That's why I'm willing to take the risk.
Why don't you change to Campath? I have not taken Tysabri or campath or any DMD but I have heard people get offered the choice. I hope you stay well whatever happens x
Why don't you change to Campath? I have not taken Tysabri or campath or any DMD but I have heard people get offered the choice. I hope you stay well whatever happens x
Lauren!! What can I say? you are an inspiration to me, you know that, it sitting and watching your vid made me want to reach into the screen and give you a big HUG!!! I feel like we have a lovely little family here on Youtube it is so nice!!
I am pleased that your decision has made you smile and so happy that you have set some conditions for continuing with Tysabri!!
You are AMAZING sweetheart, and I only hope for the best for you always xx
@harveysmummy Hi Mel!! Oh my gosh you are SOOO sweet! Thank you for saying that! I have been a much happier person, and I am going to be extra careful!!
YOU are amazing and I think about you and Harvey all the time!! I wish the very best for you both!!
What would you do? If you had no health care Lauren? And if you don't ? How can you afford Tysabri? I have health care BUT Tysabri is to expensive (out of pocket) my SSDI leaves me with only enough to pay the electric bill! I was turned down for aid! from Biogen! But I don't care much as the (Tysabri ) NEARLY KILLED ME! But I really want to know how people are paying for a drug that is WELL NOT SO GREAT!
BENEFITS outweigh risks!! WTF PML? U R WAY OUT THERE! GOOD LUCK!
@ThePennygirl Hello! Oh gosh, this was tough to read. I'm living day by day. I have insurance and if I didn't, I would cross that bridge when I got there. Tysabri has been amazing for me, so it's hard for me to talk badly about it. The benefits have outweighed the risks for me, and many other people. We are all different, and we have to make decisions that are best for us individually. I may not be on Tysabri forever, but for right now it's the best thing to do. I wish you the best!!
I can clearly tell how much of a weight is off of your shoulders and, let me say; Thank You too. I am flattered by your comments (and your emails) and videos like yours give me confidence and strength as well. Keep up the good work Lauren and I feel 2011 will be a banner year as well. Take care Lauren! xoxo.
On Wed. I will be getting my 57th dose. Right before x-mas my symptoms took off like fire. My Dr. wasn't concerned about PML. So I took ACTHAR. It got me back where I was. This med is $30,000 (no joke). It is 5 shots. I am going to have the JCVtest on Wed. If it is positive, I don't know what I am going to do. Maybe CCSVi or chemo. In a way, I believe TY is no longer working but my MRI's have not changed since I started but maybe it is time to move on. I am lost I don't no what 2 do
@onoudint Hey! I am so glad that ACTHAR worked for you! Wow, it is awfully expensive though! Oh gosh, I totally understand how you feel about not knowing what to do...it's so hard to decide, I know. I wish you the very best!!
Take it easy Lauren & keep making MRI for that … really sorry to hear it.
You know, my last blood test showed a little hi in liver enzyme "SGPT/ALT" witch may lead to liver injury … my Neurologist told me to continue … and I will.
Take care of your self honey … and every thing will be all right..
That was meant to be 34 year old woman with MS!
missnow77 1 month ago
Hi Lauren, Just to let you know Im a 34 year with MS who is also JC positive. I was as devastated as you to get the news. This is my first time to watch any of your videos as like you I almost forget I have an illness because of how TYSABRI has helped me. I too decided to stay on the drug. My thought on it was that if I never knew I was positive for the JC virus I would have continued on Tysabri and continue to enjoy a good quality of life! All the very best- enjoy being well!
missnow77 1 month ago
@missnow77 Thank you for writing! It's so nice to know that I'm not the only one! I wish you the very best!!!
laurenvparrott 1 month ago
U might want to research IRISH MOSS it will improve ur over-all health I drink it everyday and it has improved my balance. It has so many benefits,check it out.
williamr5101 1 month ago
I WILL PRAY FOR U..YAH BLES U SMH...
williamr5101 1 month ago
Thank you for your response Lauren. Hope you're well. I've had my results back and I've also tested positive for JCV. Bummer! I have appt with neurologist on 23 Feb to discuss whether I should change meds and go onto Gilenya. Not sure if this is going to be a better option as I've researched it and the thought of being susceptible to ongoing infections and a chance of losing my sight is not a good thought. Has anyone here changed from Tysabri to Gilenya? I'd like to know how you went. xox
Filitsa4 1 month ago
@Filitsa4 I wish you the best at your appointment! Please keep me posted!!
laurenvparrott 1 month ago
Thanks for posting. My doctor is probably going to tell me I tested positive for JCV next Thursday. I was researching to figure out what that meant and was having a hard time understanding the "medical talk" online. You explained things well and I now have a list of questions to ask my doctor when I meet with him. Absolutely staying on Tysabri though! It's the best. Ran my fourth marathon last year and I've never been happier :)
6randomBeth 1 month ago
@6randomBeth I'm so happy for your! Congratulations on running in 4 marathons...WOW! I've had 54 infusions and I feel great! I wish you the very best!!
laurenvparrott 1 month ago
@6randomBeth I am so happy for you!! Is your appointment tomorrow? Let me know how it goes!!
laurenvparrott 1 month ago
Thanks Lauren for the video, I've been on Copaxone for the last 4 years and keep having more problems and new lesions at each MRI. I met with the head of our MS Clinic here where I live and he suggested that I go on Tysabri. I recently switched to Rebif from Copaxone, and my neurologist suggested I get another opinion. So I am going to go in for the blood work to check for the JC virus. Hope that Tysabri can slow things down. I'm open to talk, have a hard time doing that.
elkbow 1 month ago
@elkbow Good luck with everything...Copaxone and Beta Seron did not work for me and Tysabri has been the best! Even though I am JCV positive, I have never been on any other drugs aside from MS drugs so I feel very confident. I wish you the very best!!
laurenvparrott 1 month ago
@laurenvparrott Hi Lauren. Do you still have foot drop? I have it also, my thigh gets shocks every 12 seconds and lasts 4 seconds long, I got fitted with an AFO (Ankle Foot Orthosis), it works really well and won't allow the foot to drop.
elkbow 1 month ago
@elkbow Hey! Yes I do have foot drop. I'm going to look into an AFO - that sounds amazing! I wish you well!
laurenvparrott 1 month ago
what is this TICE AVRY that she is on ? the thing that cured her, ANYONE KIND ENOUGH TO EXPLAIN THIS TO ME? :D
DHammerr 2 months ago
@DHammerr
She is on Tysabri, its not a cure, it is another drug that can help to stop or slow down the progression of MS and what it can cause.
elkbow 1 month ago
@DHammerr The medication is called TYSABRI and is NOT a cure. It's the best medication that has worked for me and has slowed the progression of the disease.
laurenvparrott 1 month ago
I am at high risk of PML, but I'm not going to stop my Tysabri infusions. I know what all the risks are and I am under constant supervision so I'm good.
To me this is no more dangerous than it is getting out of bed in the morning, or going into traffic.
I dont know, maybe I'm wrong, but this is a decision I have to make and stick with.
Thank you for the video
And I agree with you, sometimes I dropfoot, but that is the only simptoms I have. I can also work a full job and go to school as usual :D
oliok69 2 months ago
@oliok69 Thank you for your comment! I'm sorry that it's taken so long to respond. I hope you're feeling great!!
laurenvparrott 1 month ago
I don't know much about this topic but I do have a friend who has MS, and just got diagnosed with the JCV, but what is the PML? I know she doesn't do as much research as she should but she has also been on Tysabri for a few years now and it concerns me hearing that it raises her chances of PML. I'd like to learn more to help her out and see what else can be done if anything....Wonderful Video!
codybear4you 3 months ago
@codybear4you Thank you for your comment! PML is a rare brain infection and people are more susceptible to getting the infection if they are taking an immunosuppressant drug and test positive to the JC virus. Yet, the only things to be careful about are if the person has previously been on other immunosuppresant drugs. I hope this helps a little.
laurenvparrott 1 month ago
Forgot to say that I'm from Australia. Anyway, I would like to send a prayer of hope and wellness to everyone with MS and also a bith thank you to our wonderful carers. Lauren, you are an inspiration to us all. God bless you and know that because of people like you, strength is given to the rest of us. Love & hugs. Fil xox
Filitsa4 3 months ago
@Filitsa4 Hello Fil! Your comment was so sweet! I'm sorry it's taken so long to respond but I'm so glad that you are doing well! Please keep me posted on everything. I'm sending you a prayer of hope and wellness!!
laurenvparrott 1 month ago
Had neurologist appt today and was asked to do blood test for JC Virus/PML as I have now been on Tysabri for 14 months. After diagnosis in Dec 2009, I was put on Avonex for 3 months until I developed cystitis and then put on Copaxone for 2 months until my MS symptoms got worse. Neurologist said that Tysabri would be best for me and I agree with you, I have never felt better. I'm not sure what I would do if I tested positive. I hope that I will be as strong as you whatever the verdict. :-)
Filitsa4 3 months ago
Lauren,
Thank you so much for your encouraging, optimistic video. I've wanted to switch from Betaferon, which I've been on for 9 years (unhappily for my liver). Before that I was on Copaxone for a year and a half, but by that time I was already way past RR and getting no relief from it.
I gave blood for the JCV test yesterday. Hopefully I'll be able to start Tysabri within the next few months no matter the results of the test. My cousin has been on it for over a year and feels wonderful.
Maris
marisb14 3 months ago
@marisb14 I hope you can start Tysabri! Tha's so great to hear about your cousin. Good luck with everything!
laurenvparrott 3 months ago
Hello Everyone. I'm here to report with joy that none of you have MS! :)
All you have to do to change your life is visit a wellness centre and have them do a test for ALL HEAVY METALS in your body. You will be shocked at the test results.
They say EVERY human has metals in their body. You can't avoid them.
Once the mercury, aluminum, and tin are out of you along with all other heavy metals you will feel like a new person and be cured of MS within days. I swear this on my own life!
vancouverislandbass 4 months ago
MS IS NOT REAL! TRUST ME!
I've been researching this subject almost daily for the past few years.
Can I bet money that you have silver fillings in your teeth? If you have even one in your mouth, you now know the cause of your MS.
Search Ken Presner's recover story on google.
You will be shocked as it might be the most important information you will ever read.
He fully cured his MS by removing all his silver fillings.
It will change your life. The mercury is killing you.
vancouverislandbass 4 months ago
Hi Lauren - My brother-in-law was on Tysabri for the last 4 years he struggled with MS before he died of PML in 2010 (he battled without remission for 14 years). It was a very rapid onset and took less than 3 months from diagnosis of brain-infection\JCV to death. He knew the risks and was under the care of an MS specialist. Real people die from the Tysabri/PML link, it is not just a warning. If only there was a clear path forward. We wish you ALL the best in your journey.
drlocke42 5 months ago
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PsychDataSurveys 5 months ago
Hi Laruen,
I haven't ever been on a chemotherapy drug or an immunosuppressant drug. Doc says I'm a good candidate for tysabri! Just waiting on the blood test results. I so want to take tysabri because if it could help me with just some of my (mostly invisible symptoms) symptoms I'd feel better physically and mentally. I want to go back to school! I want to be a better Mom and wife. Your smile honey gives me hope! Stay cool in those IL summers. We moved west because of the humidity.
nedwardo3 5 months ago
@nedwardo3 That's wonderful! I want you to go back to school!! You are so sweet! I wish you the best! Keep me posted!!
laurenvparrott 5 months ago
Just found you searching for anything on PML and Tysabri. Copaxone isn't working anymore. I desperately want to go on Tysabri. I can't seem to explain what 'quality' of life means to my loved ones. Waiting for the test results...3 weeks to go. If I test negative it's a no brainer...take Tysabri. I hope I have your strength if I test positive. Can you guide me to info that would help my husband & kids understand? You've brought some hope into my life. Thank you Lauren
nedwardo3 5 months ago
@nedwardo3 I'm so glad that I could help!! I don't know of a place where you can get information, but I'm sure your doctor will. I just had my 48th infusion and I'm JCV positive. Have you ever had chemotherapy or any other immunosuppressant drugs?
laurenvparrott 5 months ago
Hi Lauren,
I tested positive for the JC Virus too and I will have my 43 infusion in September. I totally agree with you. I decided to stay on Tysabri because of quality of life. Tysabri has been a miracle theraphy for me. It wasnt an easy decision to make and I cried many tears myself. I want to wish you the very very best! Please keep us all informed.
Joy
TrinnyandSkye 6 months ago
@TrinnyandSkye Hi Joy! I'm so happy that Tysabri has worked so well for you! Oh the tears, how I can relate! I wish you the very best!! Take care!
laurenvparrott 6 months ago
Lauren,
I just got back from Vegas and was told I tested positive for JCV. I have been on Tysabri for about six years. I was on it before they pulled it off the market because of the deaths. I don't know what to do Tysabri has been wonderful for me.
Your video has given me more hope that I just might stay on Tysabri and deal with the 1 and 350 chance that I will get PML I just don't know.
krista1963 6 months ago
@krista1963 Hello! Oh good, I'm so glad my video was helpful for you! If you've already been on Tysabri for about six years, I'm pretty sure you're in the clear. I would definitely talk to you doctor, but I wouldn't be too worried. I wish you the very best!!
laurenvparrott 6 months ago
Heya! =)
Having just received my own letter with the results of my JCV test, which came back positive, I went googling and stumbled on your vid. I'm so glad to see that you decided to stay on Tysabri! I was worried that you'd quit due to a risk of 0,2% per year... =s
Those are ridiculously good odds, and having had very positive results from Tysabri myself, and knowing that not using Tysabri would mean a steady decline for sure, I'd go all in at those odds every time without blinking ;)
Drezn 6 months ago
@Drezn Yes, I feel the same way! Thank you so much for writing to me!! I wish you the very best!
laurenvparrott 6 months ago
Yes, Vern really rocks!! He motived me so much, I enjoy to watch him on youtube, he gives me courage not to give up.
Hope that you will get better and staying on JVC low :) I take my fingers cross for all of us.
vrocavesna 7 months ago
@vrocavesna Hey! Yes, Vern totally rocks. Thank you for your comment!
laurenvparrott 6 months ago
I was just diagnosed with MS in November, right before Thanksgiving and my 40th Birthday. I was on Copaxone for 4 months with very bad injection site reactions. When I had my follow up MRI it was discovered that my MS had worsened. My doctor said that I have so many new and active lesions that the radiologist stopped counting. Tysabri was strongly suggested but I am too scared to give it a try. I may have to go on interferon and I'm dreading that. You are so positive. I wish I was.
alanddebfysz 7 months ago
@alanddebfysz Hello! Trust me when I tell you that I have dreaded taking medications in the past...but medications slow the progression of the disease. Copaxone and Beta Seron did not slow my progression, but Tysabri has actually stopped my MS from progressing for the last 4 years - that's why I'm so happy with it. I wish you the very best with everything!!
laurenvparrott 7 months ago
you have a very beautiful smile :-) may it always stay like that. and good luck you really are inspiring.
theicecube007 7 months ago
@theicecube007 Wow, thank you so much!! That is so sweet!
laurenvparrott 7 months ago
I have been on Tysabri for over a year now and I got my results for the JCV test today. I tested positive which is a bit upsetting, but I am determined to stay on Tysabri as it has made such a difference to my life. Maybe I am at a higher risk of developing PML, but I know full well that if I come off this drug, I will *definitely* start relapsing at the rate I did before - so it's worth it. Thank you for your video, your positive attitude has reinforced my decision. Take care xx
loubiex 7 months ago
@loubiex I couldn't agree with you more! Thank you so much for your comment! Take care!! xoxoxo
laurenvparrott 7 months ago
Wow!! My Neuro. just told me today that I tested positive for the JC virus, I cried for about half a day. My doctor is working on what we or I can do next. I didn't know to do... I have had MS for 11 years now and it is hard at times but I am always looking on the bright side, but this is a bunch to take in.
When I got on line and heard you story about the JC virus and P.M.L. it made me feel a lot better.
THANK YOU for giving me hope!
thanks,
Francine Grasso
frannydont 7 months ago
@frannydont Hi Francine! Oh, I am SO HAPPY this video gave you hope! We are in the same position, and I truly believe everything will be fine! I would make sure your doctor knows your entire medical history before continuing Tysabri...have you had chemotherapy, drugs like methotrexate...etc. But I'm sure you will be fine! I just had my 47th infusion and I'm stronger than ever!! I wish you the very best!!
laurenvparrott 7 months ago
Hello my na
mrbonner06 8 months ago
Lauren, I am definitely taking this experience (being tested and not having MS) and turning into something positive, this has opened my eyes to what people with MS go through, but people like you who r positive give others so much hope. In Australia there is a lot of support i think. Im doing a run for charity next weekend and they hope to raise 1/2 a mill. to support the MS Australia Society. Globally its amazing how YouTube has helped so many be empowered and support each other! Hugs from Oz!
Heather3834 9 months ago
@Heather3834 Hey! I'm so sorry for taking so long to reply. You are so sweet! Thank you for saying that! How did that run turn out? I hope well! And I hope you're feeling great!
laurenvparrott 6 months ago
@laurenvparrott good thanks! The run raised over 1 million for the MS Society of Australia, which is awesome! I managed to complete it, and will do it again next year but quicker :0) I am well thanks - found out I have carpel tunnel, which though annoying at night, is nothing serious. Keep up your youtube videos, I always watch them! Keep smiling hun! xx
Heather3834 6 months ago
@argylesock74 That's awesome for you! I'm sure you'll be fine!! Good luck :)
laurenvparrott 9 months ago
@argylesock74 Yes, mine said that too. They are still doing research on the JC virus, so we will know even more soon, hopefully!!
laurenvparrott 9 months ago
I love this videoand i to am on tysabri and have been almost 3 years in june. I love it but please go to the fda ite and look at the number of pml patients and the number of treatments they have. i call biogen the makers of tyabri and i get numbers but not the same asbiogen, i think it is woth looking at. just to see the % of people and the% of risks. it never hurts to be well informed. God bless.
kristykidd71 9 months ago
@kristykidd71 Thank you so much for the info! I will take a look! God Bless!!
laurenvparrott 9 months ago
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Hi Lauren, I just want to say how grateful I am for your videos. The last 3 months I have been thinking I have MS, gone through the tests and it turns out I don't but watching your videos, through the waiting period gave me strength to deal with the uncertainty and fear and inspired me! This experience has changed me forever and I will use this for good. I have made a large donation to the MS society of Australia, due in a big part to you and I hope that I can help others. You're amazing.
Heather3834 10 months ago
Hi Lauren, I just want to say how grateful I am for your videos. The last 3 months I have been thinking I have MS, gone through the tests and it turns out I don't but watching your videos, through the waiting period gave me strength to deal with the uncertainty and fear and inspired me! This experience has changed me forever and I will use this for good. I have made a large donation to the MS society of Australia, due in a big part to you and I hope that I can help others. You're amazing.
Heather3834 10 months ago
@Heather3834 Hello! I'm so sorry for the delayed response. Wow, I am so touched by what you said!! Thank you so very much!! I really hope that you're doing well, and you'll be in my prayers!!
laurenvparrott 9 months ago
Hi Lauren, I just want to say how grateful I am for your videos. The last 3 months I have been thinking I have MS, gone through the tests and it turns out I don't but watching your videos, through the waiting period gave me strength to deal with the uncertainty and fear and inspired me! This experience has changed me forever and I will use this for good. I have made a large donation to the MS society of Australia, due in a big part to you and I hope that I can help others. You're amazing.
Heather3834 10 months ago
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Gregmills007 11 months ago
I was at my doctor’s office in September when he told me about the JC Virus study. He told about what it was about, and I said to him "You don't need to test me, I'm positive. He said, "we don't know that yet, we'll do the test. Guess what, I'm postive. I'm stay on Tysabri. Like you, I was on other meds, but the way I feel on Tysabri is something I don't ever want to change. When I talked to the Touch Prescribing people, I told them I don't ever want to go off Tysabri. JC Virus or not!
allicat93 11 months ago
Ive been considering Tysabri for some months now and will pretty soon get tested for the JC virus and have to tell my doctor whether or not I will want to take it.
I have high hopes it will work as it does for you. :)
Any works of encouragement/ inspiration???
jesser271 11 months ago
Got to do whats best for you, just make sure you are well informed. Sounds like you made a good choice & be careful. Thanks for your videos. BTW you are kinda cute ;D.
modularfish 1 year ago
i been against tysabri u know that well im startin it can u plz look at my video on it and call me i need a friend thats goin thru it 770.733.2160 thanks
MrDOZER1224 1 year ago
Hi Lauren, i'm newly diagnosed and trying to get my head around the different treatment options. I'm from Australia, my neuro has offered me tysabri to consider as one of my options. I look forward to your future videos to see how you're going, and you've definately given me some more questions to ask, such as if i was on tysabri can i have closer follow up, get tested for JC virus etc. Thanks so much. All these video blogs from people like yourself are so helpful for newly diagnosed ppl!
mkmoose1 1 year ago
@mkmoose1 Thank you for writing from Australia! You are so smart for researching into things! When on Tysabri, the only way to have close follow up is by being completely open and honest with your physician. It's essential to be pro-active by taking note of any changes, and then conveying that to your physician. You can get tested for the JC virus if your physician is participating in the Stratify study. Please feel free to ask me questions any time!!! I wish you the best!
laurenvparrott 1 year ago
you are such an inspiration... i think ive watched almost all of your videos. i think i might have MS, but i dont know yet. im hoping for the best, but expecting the worst so i dont get too upset when i get the news. thank you for doing what you do.
faraldgv 1 year ago
@faraldgv Thank you so much for your kind message! I just want you to know that whatever happens, you will be fine!! Please write anytime!
laurenvparrott 1 year ago
Hello Lauren, please be strong. My wife has had MS since age 13, she is turning 20 on April 1st and has been on Tysabri since June 2009. She's had 21 infusions and will soon receive her 22nd infusion. It is very difficult cheering her up, especially when I am at work. Seeing your video's helps my wife stay positive. My wife can see that she is not the only young person going through depression and woring about PML. Please do not give up, my wife looks forward to more of your videos. =0)
antant6970 1 year ago
@antant6970 Hello! I will not give up, I promise you! I'm really happy that my videos help your wife! I will keep fighting, and I hope your wife does the same! I wish you both the best!!
laurenvparrott 1 year ago
well i hope you get better
watzgoodinthe711 1 year ago
@watzgoodinthe711 Thank you!
laurenvparrott 1 year ago
Hello to young Lauren. my name is Viktor and only saying Hello.
Gnawonit 1 year ago
@Gnawonit Hi Viktor! Thank you for writing! I hope you are doing well!
laurenvparrott 1 year ago
Thank you Lauren
danielek1871 1 year ago
@danielek1871 Thank you!
laurenvparrott 1 year ago
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ru4cats 1 year ago
Having been diagnosed last June, I found and have followed you and Vern's video updates ever since. I, too, tested positive for JC antibodies, but my neurologist and I agree that I'll stay on Tysabri for at least a couple years. Life is full of probabilities, and I, too, am willing to "take the risk" of PML. You, both, have been and will continue to be my inspiration.
ru4cats 1 year ago
@ru4cats Thank you so much for your message! I wish you the very best!
laurenvparrott 1 year ago
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check out my vids let me know what u think
MrDOZER1224 1 year ago
thank u im noone to judge but i honestly look into it trust me
MrDOZER1224 1 year ago
yes i did have it done at first it was like damn thing didnt work a month and half later i feel normal thank god no more ms i put money on that
MrDOZER1224 1 year ago
@MrDOZER1224 I am so happy for you! Good luck with everything!
laurenvparrott 1 year ago
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blak4001 1 year ago
Hi Lauren -- I had the blood sample for my JC virus test taken 3 weeks ago, I hope its negative, but if it is not--- I will stay on Tysabri as well, this med is worth the risk :-) -- Lots of hugs for you, you are a star!!
blak4001 1 year ago
@blak4001 Oh thank you so much for your message! I hope you are negative too! If not, make sure to be closely monitored! I wish you the best!
laurenvparrott 1 year ago
Hi Lauren -- thank you so much for making this recent video about your JC virus status. Your smiling happy face always does wonders for me. I find your willingness to share your personal life and experience with MS so generous and reassuring. And I'm glad that you made the best decision for you!
remy91111 1 year ago
@remy91111 Thank you so much!! I really appreciate your message!! I wish you the best!
laurenvparrott 1 year ago
hello Lauren .. my name is mo, im a fan of your youtube uploads. im still on betaferon but i think you made a brave decision for your self by continuing on tysabri despite the pml risk. so keep the good spirits high for the new year, and i hope for you the very best. > mo
mohammedaljobeh 1 year ago
@mohammedaljobeh Hi Mo! Thank you so much for your comment! I hope betaferon is working well for you!!
laurenvparrott 1 year ago
Oh yeah btw.
I am proud of you.
irishbear76 1 year ago 2
@irishbear76 Aww, thank you :)
laurenvparrott 1 year ago
Lauren,
Patients should be empowered to choose their own care.
BASIC HUMAN RIGHTS YO! :)
Be well nice lady :P
Mark
irishbear76 1 year ago 2
@irishbear76 Hey Mark!! Thank you so much for the message!! I agree!!
laurenvparrott 1 year ago
Lauren we all love you... I also was tested for the jc virus but came back with indeterminate. I would be the same I would still take tysabri even if I have the jc virus. The benefits outweigh the risks for me. If it wasn't for this drug I wouldn't be walking today and my Husband and my 2 small children deserve more in life. I have now completed 16 infusions and don't plan on quitting any time soon. Lots of luv, Lauren you are a blessing to us all.
micah5five 1 year ago
My neuro has me seeing her every 3mon with an mri every 6mon. I also told my Neuro that if it is my time to go whether it be PML or a car accident or whatever it will be my time to go. So for me taking Tysabri and the risk of pml didn't even faze me.
micah5five 1 year ago
@micah5five Hello! You are so kind for writing such a sweet message! I agree, the benefits outweigh the risks and I think you are so caring for thinking of your family like that! I wish you the best!! Lots of love to you!!
laurenvparrott 1 year ago
Lauren,
I'm so sorry you've been in such turmoil. Don't wait to say something next time. We could have been supporting you! Of course I'm totally the pot calling the kettle black. I'm pretty silent until my crisis is over! I say you meet me in California to be liberated? I think I'm going in March. :)
MsHopeforhealing 1 year ago
@MsHopeforhealing Oh, thank you so much!! I know, I'd always be there to support you too, of course! But it's hard when you're going through a really hard time. I wish I could meet you in California! I wish you the best with the Liberation Procedure!! Let me know how everything goes!!
laurenvparrott 1 year ago
Get off that horse-medicine.
Alexknobsob 1 year ago
I am glad you are doing well, Lauren! I also tested positive for the JC virus. I have decided to stay on the drug for now. I already had my 20th Infusion and feel the best since my diagnosis! Not a single relapse while on Tysabri!! Best wishes!!
WithCourage2008 1 year ago
@WithCourage2008 Thank you so much! I feel the same way! Best wishes to you!!
laurenvparrott 1 year ago
Look just do the ccsvi treatment and get off that medicine trust me
mfgutierrez07 1 year ago
@mfgutierrez07 Have you had it done?
laurenvparrott 1 year ago
@mfgutierrez07 I had my head and neck scanned and everything was just fine no flattened/twisted arteries so for me ccsvi wouldn't work unless its in my spine. So I am also curious to know about those with the same result as mine and what Dr. Zamboni thinks. Its all confusing to me lol.
micah5five 1 year ago
i'm just pleased you are ok my friend, i was concerned because i haven't seen a video for some time. you are in my thoughts, love to you and your family. (p.s. i sent you a message)
xxxx
tonywilde1234 1 year ago
@tonywilde1234 Thank you so much Tony! I wrote you a message back, but as always, I love hearing from you and I hope you are having a wonderful week!! Lots of love to you!
xoxoxo
Lauren :)
laurenvparrott 1 year ago
Hi Lauren, I just wanted to say thank you for your video's! I have been watching them since my diagnosis and you have given me so much inspiration and helped me to stay positive.
I wish you all the best and hello from New Zealand!!
MaThIaSis21 1 year ago
Hi Lauren, thanks so much for the video, I was never tested or even offered a test to see if I have the JC virus I've had 32 Tysabri infusion so far and I've never felt better I don't know if offered the test I'd take I wouldn't come of Tysabri for anything it has giving me my life back and if I did take the test and it was positive I would still stay on it I know how bad life was before Tysabri and there's no way I'd risk that again. take care and be strong all the best Mark xx
markolad 1 year ago
@markolad Hi Mark! Thank you so much for saying that! Vern and I are on the same page! I wish you the very best with everything!! xoxoxo
laurenvparrott 1 year ago
@laurenvparrott Glad I'm not the only 1 who thinks like that :). I said I'd rather live 6 months the way I am now with the Tysabri than live a life the way I was before Tysabri its giving me a second chance at life and I make the must of it and live and enjoy every moment of it. I thank god every morning I can get out of bed put my feet on the ground and walk, I couldn't even get out of bed before Tysabri. I'll keep taking it till they find a cure :)! I wish you all the best xoxox
markolad 1 year ago
@markolad Wow, your story is so inspiring! I wish YOU all the best! xoxoxo
laurenvparrott 1 year ago
Lauren, I think you made the right decision. There is a 100% chance you will have MS tomorrow and next year and 10 years from now, but the chances of you getting PML are miniscule (0.2%). I feel that all the talk about CCSVI is an internet phenomenon and people will be disappointed in the end, just like all the other proclaimed miracles over the years. Go with what works, as it obviously does for you......:o) o) o)
7mumfred7 1 year ago
@7mumfred7 Hello! Thank you so much! You are so right!!
laurenvparrott 1 year ago
You made me smile when you said you were going to stay on Tysabri! You are doing so well on it....it is the right choice, Lauren! The odds of developing PML when on Tysabri are 1 in 1000? Or is it 1 in 10,000? How much greater is the risk when you have the JCV? Anyway, I saw the CEO of Biogen on CNBC the other day, and he is VERY happy with Tysabri, even saying the evidence shows it is the most efficacious of the DMT's! I thought of you! Ciao, Bella!
navymuret 1 year ago
@navymuret Hey!!! Thank you so much for saying that! The odds are 1 in 1000, and I feel amazing so I don't want to stop! Yes, it is the most effective drug out there! I hope you're doing well! Ciao bello!!
laurenvparrott 1 year ago
Years ago I bought a motorcycle I really loved. It brought me lots of joy and I drove it for a few years before the engine developed a ticking sound I was sure spelled doom. Driving it each day I kept picturing it failing on the road. Eventually because of this growing association I didn't enjoy driving it anymore, so I sold it to a neighbor. He rode it for five years that I'm aware of and as far as I know was still riding it when I lost contact with him. Our minds can ruin what we enjoy most.
gphx 1 year ago
@gphx I agree with you completely!! I always try to focus on the positive, and what makes me happy. Even though I will be cautious while continuing to take Tysabri, I'm not stopping because it helps me feel amazing! Thank you so much for your story!!
laurenvparrott 1 year ago
ps. Have you considered having the CCSVI angioplasty so you can go off Tysabri altogether ??
rickileeway 1 year ago
@rickileeway I have considered it, but I still think it's too new. I'd like to wait until more test results have shown consistent improvements in patients. But it sure sounds exciting!!
laurenvparrott 1 year ago
So sorry to hear you have this extra burden to carry Lauren. This must have been such a shock. I know you will find the strength to deal with such a heavy load though. Your ability to deal with it is evident in this video............still your usual calm, happy, sweet self. :-)
rickileeway 1 year ago
@rickileeway Hello! Yes, this was a shock, but you're right - I'll find the strength to keep moving forward! You are so sweet, thank you so much for your message!! I hope you're doing well!
laurenvparrott 1 year ago
Wow- Lauren you are such a source of inspiration and hope! I am glad you have decided this for yourself to stick with what you’re doing, I hope that the stress of this news is somewhat leaving you! I really hope the best for you and I check YouTube daily to see if your making any new video's! I Hope you never stop doing these video's, you are helping so many people! We all need your strength- Thank you, God bless you!
JoshHewlett 1 year ago
@JoshHewlett Hi Josh!! You are so sweet!! Thank you very much! Yes, the stress is somewhat leaving me! I really appreciate what you wrote - thank you! I hope you are doing well! God Bless You!
laurenvparrott 1 year ago
Nice to hear from you again Lauren. Glad to hear they'll be keeping a closer eye on you now. All the very best for the coming year..and beyond.
Keep smiling! :o)
gavooon 1 year ago
@gavooon Thank you so much!! I wish you the very best for 2011 as well!!
laurenvparrott 1 year ago
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Thank you so much for all your videos. You are such a source of strength for me. When I was first diagnosed, I felt like giving up. You showed me I could fight this.
lilliputin1 1 year ago
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Thank you so much for all your videos. You are such a source of strength for me. When I was first diagnosed, I felt like giving up. You showed me I could fight this.
lilliputin1 1 year ago
This has been flagged as spam show
Thank you so much for all your videos. You are such a source of strength for me. When I was first diagnosed, I felt like giving up. You showed me I could fight this.
lilliputin1 1 year ago
Thank you so much for all your videos. You are such a source of strength for me. When I was first diagnosed, I felt like giving up. You showed me I could fight this.
lilliputin1 1 year ago
@lilliputin1 Oh my gosh, I feel honored!! I am so glad that my videos have been able to help you! I wish you the very best!!
laurenvparrott 1 year ago
Lauren stay strong! You are in my thoughts and prayers!!! Thanks for the info and for being so brave to share your story with us! Hang in there!
Brandi
5ChiLanta 1 year ago
@5ChiLanta Hi Brandi! Thank you so much!! I hope you are doing well!!
laurenvparrott 1 year ago
Hi Lauren, when you have MS none of our choices are ever easy. It is good you were able to have this test so you know and can monitor more closely. I wish it would be made part of the protocols for Tysabri users so everyone can have the option to have such regular monitoring if they have been exposed to JCV. I don't think the test is yet available in Australia unfortunately. Have a great 2011. Kerri
kezzcass 1 year ago
@kezzcass Hi Kerri! You're right, NO choices are ever easy! I completely agree with you - I hope that this test absolutely becomes part of the protocols for Tysabri users. I hope it becomes available worldwide very soon. I hope you're having a wonderful 2011!!
laurenvparrott 1 year ago
im so happy for you i hope i can feel happy like you again:)
spencekilla1979 1 year ago
@spencekilla1979 Thank you so much!! I hope you can too, and I'm sure you will!!
laurenvparrott 1 year ago
I admire you for making a tough decision and following what you think is right for you despite conflicting information. Jelinek said something like 80% of people have JC activated after 18 months on Tysabri so I think you're in the majority, and the majority haven't even had the test. Good idea re monitoring your symptoms, as long as it doesn't turn into paranoia or affect your enjoyment of life. All the best to you Lauren, you're a shining light. Amanda.
missalgernon 1 year ago
@missalgernon Hi Amanda! Thank you very much for your comment! I'm hoping the increased monitoring will decrease any paranoia that I may feel! I wish you the best!
laurenvparrott 1 year ago
Lauren. I've missed you!! I'm sorry you've had a crappy couple of months but you certainly seem very relieved and happy now. So I'm glad you're happy and made the decision that felt best for you! You seem so energised and looking very healthy :P Love you! xx PS Let's do what we've been planning for agggges this year. ok!
carlogiovanni 1 year ago
@carlogiovanni Hi Carl!! Aww, you are so sweet - thank you! LOVE YOU! Let's...let's do that! I'm seeing a doctor to work on my vocal chords!! :)
laurenvparrott 1 year ago
Hi Lauren,
I am glad that you had the testing done and are following a more intense protocol. I have many friends who have done very well on Tysabri and then other's who haven't. As you said it is a personal choice and if you find the benefit out weighs the risk then it is the right choice for you.
It seems to me and I may be wrong but the people who have been on it for such a long time seem to be doing better, like Vern. I wish you nothing but the best and a happy 2011.
Andrea
MSVlogSupport 1 year ago
@MSVlogSupport
Hi Andrea!
I also have some friends that have done extremely well, and some who have not on Tysabri. I really appreciate what you said! Vern and I have talked and we've had a very similar experience. I hope you are doing well, and I wish you a very happy 2011!!
xoxo
Lauren
laurenvparrott 1 year ago
@laurenvparrott I am currently uploading my 5 month post CCSVI video, but I do address how upset I get when I see others attacking people for whatever choice they make on treatment. There is a pretty long rant about it in the video, but I feel it is really important that we respect each other and support. We all can have an opinion but consider what you are saying. You have no idea what kind of frame of mind a person is in and hurtful words about what they choose can be very damaging.
MSVlogSupport 1 year ago
@MSVlogSupport I couldn't agree more Andrea!! I'm going to watch your video right now!
laurenvparrott 1 year ago
Hi Lauren, I just have to say that all I do is think of Angela. We can not forget what happened to her. Best of luck to you.
tazscott14 1 year ago
@tazscott14 Trust me, I do! I have been in touch with Angela and her husband Keith throughout this situation. I pray for her every day and she knows that! But just because she had an unfortunate reaction to Tysabri does not mean I will, or other patients taking it will. I wish her the very best, I've spent hours crying and praying for her, and I really hope for a positive recovery soon! But I've been on Tysabri a lot longer than she was, and I've seen amazing results. Thanks for your concern!
laurenvparrott 1 year ago
@laurenvparrott I guess what I am trying to say is that I lost a great deal of trust in the medical profession. It looks as though they are learning as they go. So, how safe are the trials that they conduct? They say that the trials for C.C.S.V.I. need more time, but it seems as though they did not take enough time to test Tysabri. Who knows what the future holds for those taking that med or any of these DMDs for that matter. I don't think the doctors even know. Is CURE still in the dictionary?
tazscott14 1 year ago
@tazscott14 I know exactly what you mean. I'm just as frustrated as you, however, I know how I feel and have felt for 3 years. That's why I'm willing to take the risk.
laurenvparrott 1 year ago
Why don't you change to Campath? I have not taken Tysabri or campath or any DMD but I have heard people get offered the choice. I hope you stay well whatever happens x
whyworryabout2moro 1 year ago
@whyworryabout2moro Hello! Well, Tysabri has worked so well for me that I'm not going to switch to anything, but thanks for the suggestion!
laurenvparrott 1 year ago
Why don't you change to Campath? I have not taken Tysabri or campath or any DMD but I have heard people get offered the choice. I hope you stay well whatever happens x
whyworryabout2moro 1 year ago
Lauren!! What can I say? you are an inspiration to me, you know that, it sitting and watching your vid made me want to reach into the screen and give you a big HUG!!! I feel like we have a lovely little family here on Youtube it is so nice!!
I am pleased that your decision has made you smile and so happy that you have set some conditions for continuing with Tysabri!!
You are AMAZING sweetheart, and I only hope for the best for you always xx
loads of love to you and your family xxx Mel x
harveysmummy 1 year ago
@harveysmummy Hi Mel!! Oh my gosh you are SOOO sweet! Thank you for saying that! I have been a much happier person, and I am going to be extra careful!!
YOU are amazing and I think about you and Harvey all the time!! I wish the very best for you both!!
Lots of love to you and Harvey!! xoxoxoxo
Love, Lauren :)
laurenvparrott 1 year ago
What would you do? If you had no health care Lauren? And if you don't ? How can you afford Tysabri? I have health care BUT Tysabri is to expensive (out of pocket) my SSDI leaves me with only enough to pay the electric bill! I was turned down for aid! from Biogen! But I don't care much as the (Tysabri ) NEARLY KILLED ME! But I really want to know how people are paying for a drug that is WELL NOT SO GREAT!
BENEFITS outweigh risks!! WTF PML? U R WAY OUT THERE! GOOD LUCK!
ThePennygirl 1 year ago 2
@ThePennygirl Hello! Oh gosh, this was tough to read. I'm living day by day. I have insurance and if I didn't, I would cross that bridge when I got there. Tysabri has been amazing for me, so it's hard for me to talk badly about it. The benefits have outweighed the risks for me, and many other people. We are all different, and we have to make decisions that are best for us individually. I may not be on Tysabri forever, but for right now it's the best thing to do. I wish you the best!!
laurenvparrott 1 year ago
I can clearly tell how much of a weight is off of your shoulders and, let me say; Thank You too. I am flattered by your comments (and your emails) and videos like yours give me confidence and strength as well. Keep up the good work Lauren and I feel 2011 will be a banner year as well. Take care Lauren! xoxo.
vbeachy 1 year ago
@vbeachy Hi Vern!! I mean it, you are such an awesome person! I really hope you have an awesome year! I'm sure I'll talk to you soon!
laurenvparrott 1 year ago
On Wed. I will be getting my 57th dose. Right before x-mas my symptoms took off like fire. My Dr. wasn't concerned about PML. So I took ACTHAR. It got me back where I was. This med is $30,000 (no joke). It is 5 shots. I am going to have the JCVtest on Wed. If it is positive, I don't know what I am going to do. Maybe CCSVi or chemo. In a way, I believe TY is no longer working but my MRI's have not changed since I started but maybe it is time to move on. I am lost I don't no what 2 do
onoudint 1 year ago
@onoudint Hey! I am so glad that ACTHAR worked for you! Wow, it is awfully expensive though! Oh gosh, I totally understand how you feel about not knowing what to do...it's so hard to decide, I know. I wish you the very best!!
laurenvparrott 1 year ago
Take it easy Lauren & keep making MRI for that … really sorry to hear it.
You know, my last blood test showed a little hi in liver enzyme "SGPT/ALT" witch may lead to liver injury … my Neurologist told me to continue … and I will.
Take care of your self honey … and every thing will be all right..
God bliss you …..
BIG HUG
Mody
medad1 1 year ago
@medad1 Hi Mody!! Thank you for writing! I think we're both going to be just fine!! I wish you the best, as always!!
God Bless You!!
xoxoxo
Lauren :)
laurenvparrott 1 year ago