Angela -- I to am sorry to read about you and the PML. I will be posting this video to my blog: "Stu's Views & MS News" and it will appear in our next e-newsletter.
Your Message is Important as so, I will share it.
For anybody reading this message and not receiving our weekly e-newsletter visit our website to register: msviewsandnews(dot)org
Meanwhile - I hope you have gotten better with your health.
I too am using Tysabri and will be getting my 27th infusion in two weeks...
@stuart1959 good luck with your next infusion. Please, be very careful, pay attention to to every little new and old symptom. Nothing IS TOO SMALL and not important and, plesase, make sure to write evererything down and let your dctor know about everything. he might not know muvh about the PML itself but he might be able to help you and get things started in the right direction. Believe in yourself and keep being strong, you will be n my prayers and you will go on well, good luck and take care
@stuart1959 can you please write me privately to explain me this a little better? I am too too "smart" at the moment and I need to read your words again and to think of your words.I will answer you as soon as I can, I promise. I am not as good as I used to be with things in the past, but I continue to try and my best,
@xybiljan1232 i am so deeply sorry to read that your son has it too, How is he doing at this point? i might be here, still alive, to be able to bring this messah\ge to people: it is very hard, but we can be stronger than the aweful PML and, while fighting as hard as we can, we can win this and show others that keeping hope alive is very important. There are times when I want to give up too, so I understand how that's possible, but I try to go on one little step at the time Good luck
@xybiljan1232 I wanted to write you in a private way, but i can't find a way to do it, so I am sorry but I just left you a message like this here on this, i hope it's ok...i wanted to add this that i wrote before and wanted to copy here in a second comment:am so deeply sorry to read that your son has it too, How is he doing at this point? i might be here, still alive, to be able to bring this message to people: it
is very hard, but we can be stronger than the aweful PML and, while fighting as hard as we can, we can win this and show others that keeping hope alive is very important. There are times when I want to give up too, so I understand how that's possible, but I try to go on one little step at the time Good luck to you and your son. You will be both in my heart,
@michael88863 i know what you are feeling and it's hard to keep the faith alive when you are almost killed by the MS drug that many neurologists push you to take and push until you take it. I can tell you that my faith, just like my body, has been suffering greatly because of this...what happened to me was horrible, much worse than the disease, even if I had an aggressive fform of itML was worse than anything I ever had to go through in life...I wish I wuld know why God is like this
Dear Angela, I will be praying for you. I took Tysabri for about 33 doses before I stopped because I was afraid getting PML. I am so very sorry that you got the PML, you are very fortunate though to be alive. May God bless you and keep you safe. You are an inspiration to all of us with multiple sclerosis. You have such a sweet spirit, it comes through so clearly in your videos, you are an angel of hope.
Angela, I am truly sorry to hear what you've had to go through. I wanted to let you know that my thoughts and prayers are with you and your husband. You really inspire me with just how strong you are, regardless of all the bumps in the road.
Dear Angela, I am praying for your good health in near future.Please think positive and have positive thoughts everyday.Dream of your beautiful country and garden.You are strong person and sending you my big hugs. Bianca
My name is Declan Walsh and my wife, Natalie, was diagnosed with Tysabri related PML in December 09 . (First in Ireland) It has been quite a tough year May I first praise you, and your family, on ur courage on taking the time to do the video.
I have just set up a Google Discussion Group - PML-Tysabri for those who would like to share actual experiences and my 'offical' website is now under construction.
Angela, I am so sorry to hear about this. I am in shock tonight seeing this. You are such a strong, and inspirational person. I really am thinking about you and glad that you are in very good hands. Your husband is quite clever and so is your doctor, it seems, so I am glad for that. To say i wish you feel better, is an understatement. I am sending you lots of love, hugs, and light. xxxx
mi siedo ti guardo e penso a quanto mi stai regalando di tuo , di intimo di profondo..... la condivisione di una condizione così dolorosa ... mi fa sentire vicina tanto vicina a te a quel letto di ospedale....... ti tengo le mani ANGELA affinchè il coraggio e la forza della vita possa rimanere sempre con TE. ......... SEI UN FIORE BELLISSIMO. cristina
@07:10 I can NOT believe Angela is reassuring US, her concerned eFriends!!!!..SOooo Sweet !!! I love how grateful you are for the early detection of the PML. I pray this whole event is merely a 'speed bump' on your way to Liberation and Total Healing!!
Please know ...dear Angela and Keith...you are both in my prayers daily...
"be strong in the Lord and the Power of His Might!! "
Angela, I hope you are continuing to improve! When I was having concerns a couple weeks ago, it was when I mentioned the new cognitive problems that my neuro sent me for for an MRI. Have you heard anything about the difference in lesions between PML and MS? I've never seen anything online about it, but my neuro is wonderful--I trust him-- and is fully confident he can tell the difference. When you're up to it please give us a vid update on your condition? Peace to you.
Hi, this is Keith writing for Angela. What we were told when Angela had her MRI, is that if you are on Tysabri, you should not have new lesions (very unusual). The two types do appear quite similar. In fact, the local radiologist felt it was simply an MS lesion. Our neurologist did not agree (considering the onset and type of new symptoms) so reccomended the lumbar puncture to test for the virus. Had we just gone with the radiologists report, we would not have caught this.
Hi Angela! I'm so sorry that I just saw this video! I swear, you are an angel sent from heaven! I know you are going to improve because you have so many people praying for you. I love you so much and I look forward to your recovery. I'm praying for you every day!
Hi Angela! I'm so sorry that I just saw this video! I swear, you are an angel sent from heaven! I know you are going to improve because you have so many people praying for you. I love you so much and I look forward to your recovery. I'm praying for you every day!
I'm so very happy for you that you caught it so early, and prospects look so good! I just had my 22nd Tysabri infusion and had a PML scare with some symptoms, had an MRI and they said no, just a mild relapse. I'm glad they know now how to tell the difference of the lesions. My main fear has always been the cognition problems, which is why I went on Tysabri in the first place. Surprised you say it was Tysabri causing yours? that's new to me. All best to you and yours!
@etymon2 Dear Theresa, we are all so different and Tysabri made ua feel in different ways. My cognition problems began when I took the drug, but thi doesn't happen to everyone. Luckily, most people's cognition, gets better with Tysabri. I am "little different :)
Thank you so much fo the wishes. I need them do much while I fight PML. I Aam writung you wuth one finger but I am happy to br able to do this and many morethings. I am still going strong! :)
@etymon2 you will possibly see that doctors will say that PML will show cognitive issuesfirst...hopkins already told me hat they will look at all of their patients taking tysabrithat have with cognitive problems.maybe, something good will come out of this...I believe so and I hope so!!!!!!!!!!!!!!!!! i hope it can teach something good to neurologists:)
Hi Angela, Thanks so much for your informative timely video. I'm so pleased you are doing well considering ......My thoughts and prayers have been with you. Special thanks too to your husband. I pray you keep improving. My thoughts and wishes are with you at this time. Regards, Robyn. (51jessica51).
@whyworryabout2moro they offerered them to me. druga are always offered, even if they hurt the body more...i am waiting to find out my virus count. and do another MRIand boloos test...yes, they di offer it to me.
Thank you for making this video! And i do agree that lumbar puncture is not a big deal, i have had it only once, but i had an excellent tech. It was over within a few minutes and it didnt hurt. The biggest thing to anyone getting LP is to remember that when they tell you to curl up in a tight little ball with your chin on your chest, it is for a really good reason...to seperate the vertebrae for the needle to pass through.
I think you are a true MS champion and i am praying for your full recov
Dear Angela, You are an amazing woman who shows so much strength to many of us, it is your positive attitude that is going to help you I admire you so much. Diego and I wish you a speedy recovery and we pray for the best..
Thank you for taking the time to make this video even though you are in the hospital. I appreciate it so much. I am on Tysabri and getting ready to go off in the next month (this was planned for awhile). I worry about PML. But your video has given me hope for you and me. Please take care and we will see you at the next video! I'm thankful that you are so lucky! Love, Remy
It is so good to see you again Angela! I've been so worried and missing you so much! I'm glad you're still staying strong and positive. Nothing seems to grind you down- you're amazing! I guess we won't be infusion buddies anymore- I'm stopping now too. It was working really well for me, but the risks are starting to far outweigh the benefits now.
I'm sending you lots of love and positive thoughts.
Take care- big hugs to you and Keith (thank you for the updates Keith!),
Angela, So sorry you are going thru all this. Like you said one day at a time. I'm sad you have to go thru this. Your a strong sweet person and I pray for you.
Thank you so much for this video update! I have been worried sick about you since I found out about the diagnosis! I am relieved to hear that you are in decent shape! Thank God! I am glad you can still walk! That is huge!! I hope you get even better!! Keep your positive attitude and reduce stressers! You remain in my prayers, Angela! Please, keep us updated! Big hug! <3
Thank you for the English version. I took Tysabri too and PML scared the crap out of me I worried I had it at one time but my neuro did not believe I did and I cont'd. As far as I know I don't have it and I have quit Tysabri after a sinus infection followed by a lung infection! That was scary enough - I hate meds too, I can't believe I ended up with this stupid illness!
I hope that the plasmapheresis will help you and I hope PML can be stopped!
Thank you for the update. You look great and I am glad that you caught this in time. I worry about taking these drugs when the people that give them to you don't really know what they are all about or what they will do to you. I fully agree with what you say (you know how I feel about taking drugs). Stay strong and things will get better. Hope to hear from you again very soon.
Then to send your lumbar puncture to the appropriate place to diagnose. I feel these things that happened in sequence were of utmost importance and I wonder if anyone else in your situation would have had that kind of attention. How can we be sure that the labs are diagnosing to such a precise degree as was done in your case? Thank goodness.
This was an amazing video. I hope you are getting better and better Angela and I know with your positive attitude and the support you have, you will. I think that it is good that you discussed in the video, your minor symptoms that your husband and then your doctor was so aggressive to pick up on so quickly.
Thank you for taking the time to update us, I am so glad that you are doing better! Your video was very informative and your concern for others was evident. I agree that anyone thinking of using tysabri should be well informed on the dangers and not just the benefits. I have been blessed by the drug but I'm well aware of the risks and would never encourage anyone to try it based on my opinion. I look forward to more updates. You are in my thoughts and prayers.
THANK YOU FOR YOUR UPDATE !! LOT OF US HAVE YOU IN OUR THOUGHTS :)
I am so very glad that the wonderful medical staff were able to help a very critical issue. Now my cynicism is starting to show ...... only because of this issue these Docs HAD TO HELP YOU. Their butts are on the line now. It disgusts me to no end that Angioplasty IS safe Tysabri IS NOT SAFE. They want us sick so they can live of off us. Sorry Angela but you do not deserve this and these nureos know the risks.
Hi Angela, I was so happy to see a video from you and to see you looking and sounding pretty good considering everything you are going through. I love that you still have a sense of humor even in the face of something so challenging. I am so happy that they caught it early and I feel in my heart you are going to pull through this.
Much love to you and you family and for your honesty.
Hi Angela, I think about you every single minute. There are no words to express any more than I already have. I hope in some small way my video helped; at least I know of some people that are going to stop Tysabri or look to eventually stop as soon as they can. I hope so much to be able to see you soon. I promise to talk about good things. I love you so very much, so does Mickey. You are in my constant thoughts and prayers. Love and hugs, Judy
I hope you woun't get a really bad Iris attack!! I pray for you and think about you every single day. I'm so glade that it was caught early though.
I always tell everybody about the PML risks. I will talk to my doctor very soon about it too, because this really scares me even more now that I know you are ill.
Oh, and Mark: I think even atheists pray for Angela. Because we all love you, Angela. You are doing a very wise thing to try to take one day at a time. That's the only way. God bless.
Angela. I made a video awhile ago about our purpose. Your purpose has not been achieved yet. You must really have a lot of love. You have chosen the hardest road. This means you are blessed. I am putting positive thoughts and prayer for you. You are my friend and in many ways my hero. I am also prayng for ur family. YOu have more people than you can imagine sending you positive (LOVE) energy and STRENGTH. We are not worthy to hold your hamburger shoes. :) All my love to you. Mark
@irishbear76 Amen to that Mark, my brother in humanity and citizen of the world , may god heal Angela from All sickness, pml , ms , ccsvi ...etc
And the rest of us too, whether it's ms or a simple cold. there is too much pain and suffering in this world but god and his angels are always nearby...closer than we may think. i hope all those who are suffering find some peace and comfort in Him
I just want to say thank you for sharing your story, it really touched my heart. I will be praying for you to make it through any future rough times from this without too much difficulty and be well.
angela, thank you for updated us, we've all been so very worried about you. Rest and heal, get home to your flowers and place of feeling safe and comfortable. Most of all... again heal and keep us posted. many hugs and prayers are sent your way
Angela, My prayers are with you and I am happy to see that you are doing better than I expected. I am currently on steroids for a realpse but I was on tysabri for 8 months and it caused alot of problems for me. Please keep me posted on your progress from here on out. You are a true hero and God is with you I truly believe watching over you. I will make you a cake and send it to you because yoy deserve that and a whole lot more...what is your favorite cake? Let me know...I love you. Stacy
Angela! My darlin' I'm so happy to see that you are doing well! I and hundreds of others have been so worried about you. May the good Lord continue to care for you and make you well so you may get the Liberation procedure! Love and prayers!
Hi Angela. What a sweet,beautiful person you are!!!! I hope you feel better real soon.
When I first heard of tysabri I was gonna ask my doc for it but a few days later I heard the FDA recalled it!! So never gave it another thought after they brought it back.
Anyways you are a very strong person who will get through this!!! {{{{{HUGS}}}}} Vicki
Angela so glad to see you talking, I have been very worried about you. So glad your husband was aware of your changes. Would you consider having angioplasty, it sure helped me and I am back to who I was before.
It was so nice to see and hear you, all your positive energy even though you are going throught this. I send warm thoughts that they did catch it early and you have a speedy, complete recovery!
@lovingfatalist My neuro was also unwilling too Toby. I was upset at
the the time too. He actually told my regular doc who's a friend of his that he believes there's a lot of "hype" surrounding this drug like other drugs which will eventually die down.
I am so glad to see you. You are beautiful! You provide us with such useful information. You are an amazing woman for doing this in the video in the hospital. Thank you Angela......xx
How wonderful to see your sweet smile again Angela. You've made my day! You explained everything so well. You are a very strong & compassionate person. Praying you continue to feel stronger with each day.
@madysy2007i agrree with you. DRUG FREE is much better and now i can prove it.
i went to my cranial doctor today and we are ready toi be a team again and to fight this problem so i can back to where e hsd brought me before i took this drug he was the real healwr...not the drug! that caused ne to get sicker...
Angela, Thank you so much for posting this. It is such a HUGE relief to see you and hear from you. You are amazing, you know that? I have faith now that you will be well. Again, I wish you strength and health and love and am trying to send you my energy. Dr Jelinek said that IV immunoglobulins is another option for the Tysabri rebound effect (rebound being something that most don't know about when they begin, as you said). I'm so so sorry youre going through all this. Thank you again. Manda xxoo
Big HUG to you girl. You are such an amazing woman and wow - how much love have people been sending you? I've been reading a lot of the messages. Thank you for your honesty about this drug. Everyone has their own opinions but I am with you on this one! No more for me. I miss my first infusion this week. How ironic that you have a hole in your jugular vein?? Far out! Angela you have a strong mind and a lot of love around that will serve you well. All my thoughts and prayers with you. Kerri xo
AM SO HAPPY TO HEAR FROM YOU!!! Am sorry this has happened to you ! I was spared!!! After my reactions from it! I feel I was SPARED! You are such an inspiration to so many and loved dearly for all you do!
Angela -- I to am sorry to read about you and the PML. I will be posting this video to my blog: "Stu's Views & MS News" and it will appear in our next e-newsletter.
Your Message is Important as so, I will share it.
For anybody reading this message and not receiving our weekly e-newsletter visit our website to register: msviewsandnews(dot)org
Meanwhile - I hope you have gotten better with your health.
I too am using Tysabri and will be getting my 27th infusion in two weeks...
Regards
Stuart
stuart1959 3 weeks ago
@stuart1959 good luck with your next infusion. Please, be very careful, pay attention to to every little new and old symptom. Nothing IS TOO SMALL and not important and, plesase, make sure to write evererything down and let your dctor know about everything. he might not know muvh about the PML itself but he might be able to help you and get things started in the right direction. Believe in yourself and keep being strong, you will be n my prayers and you will go on well, good luck and take care
angelusa73 3 weeks ago
@stuart1959 can you please write me privately to explain me this a little better? I am too too "smart" at the moment and I need to read your words again and to think of your words.I will answer you as soon as I can, I promise. I am not as good as I used to be with things in the past, but I continue to try and my best,
hugs t all,
Angela
angelusa73 3 weeks ago
GOD LUCK COUS I NOW WHAT YOUR FILLING COUSE MY SON HAVE IT
xybiljan1232 4 weeks ago
@xybiljan1232 i am so deeply sorry to read that your son has it too, How is he doing at this point? i might be here, still alive, to be able to bring this messah\ge to people: it is very hard, but we can be stronger than the aweful PML and, while fighting as hard as we can, we can win this and show others that keeping hope alive is very important. There are times when I want to give up too, so I understand how that's possible, but I try to go on one little step at the time Good luck
angelusa73 4 weeks ago
@xybiljan1232 I wanted to write you in a private way, but i can't find a way to do it, so I am sorry but I just left you a message like this here on this, i hope it's ok...i wanted to add this that i wrote before and wanted to copy here in a second comment:am so deeply sorry to read that your son has it too, How is he doing at this point? i might be here, still alive, to be able to bring this message to people: it
angelusa73 4 weeks ago
@angelusa73
is very hard, but we can be stronger than the aweful PML and, while fighting as hard as we can, we can win this and show others that keeping hope alive is very important. There are times when I want to give up too, so I understand how that's possible, but I try to go on one little step at the time Good luck to you and your son. You will be both in my heart,
hugs,
Angela
angelusa73 4 weeks ago
@dovemaiden - how can you believe in God? why did he create ms? why did he then create PML? Are you stupid? seriously
michael88863 2 months ago
@michael88863 i know what you are feeling and it's hard to keep the faith alive when you are almost killed by the MS drug that many neurologists push you to take and push until you take it. I can tell you that my faith, just like my body, has been suffering greatly because of this...what happened to me was horrible, much worse than the disease, even if I had an aggressive fform of itML was worse than anything I ever had to go through in life...I wish I wuld know why God is like this
angelusa73 2 months ago
Dear Angela, I will be praying for you. I took Tysabri for about 33 doses before I stopped because I was afraid getting PML. I am so very sorry that you got the PML, you are very fortunate though to be alive. May God bless you and keep you safe. You are an inspiration to all of us with multiple sclerosis. You have such a sweet spirit, it comes through so clearly in your videos, you are an angel of hope.
dovemaiden333 11 months ago
Angela, I am truly sorry to hear what you've had to go through. I wanted to let you know that my thoughts and prayers are with you and your husband. You really inspire me with just how strong you are, regardless of all the bumps in the road.
Hugs and kisses,
Laurie
xdarthduckiex 1 year ago
Dear Angela, I am praying for your good health in near future.Please think positive and have positive thoughts everyday.Dream of your beautiful country and garden.You are strong person and sending you my big hugs. Bianca
beebutterfly09 1 year ago
Angela, I am thinking of you and send you all of my best wishes for recovery! You are a lovely and strong woman. Tessa xo
Gtlr123 1 year ago
hello angela, i hope u re doing better .
Ramy0032 1 year ago
What's the stat
mfgutierrez07 1 year ago
Dearest Angela, I hope the flowers bring joy to you, they come from us all! Smile with them and forget the make up! WE LOVE YOU... susan
ThePennygirl 1 year ago
Angela
My name is Declan Walsh and my wife, Natalie, was diagnosed with Tysabri related PML in December 09 . (First in Ireland) It has been quite a tough year May I first praise you, and your family, on ur courage on taking the time to do the video.
I have just set up a Google Discussion Group - PML-Tysabri for those who would like to share actual experiences and my 'offical' website is now under construction.
Please stay stong and confident.
Best wishes
Declan
declanrwalsh 1 year ago
Have a Happy New Year How are you?
mzdjpb 1 year ago
Angela and Keith, My wishes for a brighter new year are with you you both! Judy has keep mchruch e informed on the issues as best she can.
I hope others diagnosed with PML come forward and share stories and updates! Kudos for giving Judy the option to speak for you on whats happening.
As always I pray for you and your 1st in my thoughts.
Love susan
ThePennygirl 1 year ago
Angela coraggio non mollare un abbraccio
61TigerMan 1 year ago
Angela, I am so sorry to hear about this. I am in shock tonight seeing this. You are such a strong, and inspirational person. I really am thinking about you and glad that you are in very good hands. Your husband is quite clever and so is your doctor, it seems, so I am glad for that. To say i wish you feel better, is an understatement. I am sending you lots of love, hugs, and light. xxxx
teslagirlM 1 year ago
mi siedo ti guardo e penso a quanto mi stai regalando di tuo , di intimo di profondo..... la condivisione di una condizione così dolorosa ... mi fa sentire vicina tanto vicina a te a quel letto di ospedale....... ti tengo le mani ANGELA affinchè il coraggio e la forza della vita possa rimanere sempre con TE. ......... SEI UN FIORE BELLISSIMO. cristina
wheeze29 1 year ago
Angela siamo tuti con te
Alba
grease52 1 year ago
Coraggio Angela. Un abbraccio di Francia
dodiese09 1 year ago
Angela, coraggio e un abbraccio forte dall'Italia.
Anita
bellissimoegitto 1 year ago
Thank you for doing a post in English!!! (((hugs)))
RODEMOM77 1 year ago 2
Thank you very much for information. Hope that you'll do very well.
vrocavesna 1 year ago
Ritorna presto fra noi,Angela.....un bacione e un abbraccione!!!!!
rosabiancablu 1 year ago
Un abbraccio fortissimo dear Angela..
antieana 1 year ago
@antieana GRAZIE...
UN BACIO,
ANGELA
angelusa73 1 year ago
@07:10 I can NOT believe Angela is reassuring US, her concerned eFriends!!!!..SOooo Sweet !!! I love how grateful you are for the early detection of the PML. I pray this whole event is merely a 'speed bump' on your way to Liberation and Total Healing!!
Please know ...dear Angela and Keith...you are both in my prayers daily...
"be strong in the Lord and the Power of His Might!! "
kkkkkkatherine 1 year ago 2
FORZA ANGELA....siamo tutti con te so che ce la farai.....un grandissimo abbraccio da tutti gli amici di Youtube
59ignazio59 1 year ago
@59ignazio59 GRAZIEEEEEEEEEEEEEEEE :)
angelusa73 1 year ago
un abbraccio...fortissimo.
brikkostello 1 year ago
@brikkostello GRAZIE...
UN BACIO
ANGELA
angelusa73 1 year ago
Angela, I hope you are continuing to improve! When I was having concerns a couple weeks ago, it was when I mentioned the new cognitive problems that my neuro sent me for for an MRI. Have you heard anything about the difference in lesions between PML and MS? I've never seen anything online about it, but my neuro is wonderful--I trust him-- and is fully confident he can tell the difference. When you're up to it please give us a vid update on your condition? Peace to you.
etymon2 1 year ago
@etymon2
Hi, this is Keith writing for Angela. What we were told when Angela had her MRI, is that if you are on Tysabri, you should not have new lesions (very unusual). The two types do appear quite similar. In fact, the local radiologist felt it was simply an MS lesion. Our neurologist did not agree (considering the onset and type of new symptoms) so reccomended the lumbar puncture to test for the virus. Had we just gone with the radiologists report, we would not have caught this.
angelusa73 1 year ago
Comment removed
astronautsandwitch 1 year ago
plz read article titled Potential treatment for progressive multifocal leukoencephalopathy (PML) announced
astronautsandwitch 1 year ago
This has been flagged as spam show
@angelusa73 plz read article
Potential treatment for progressive multifocal leukoencephalopathy (PML) announced
astronautsandwitch 1 year ago
Dear Angela! I will pray for you!. Missing you...
DarkZoneBlackWarrior 1 year ago
This has been flagged as spam show
Hi Angela! I'm so sorry that I just saw this video! I swear, you are an angel sent from heaven! I know you are going to improve because you have so many people praying for you. I love you so much and I look forward to your recovery. I'm praying for you every day!
Tanto baci!
Lauren :)
laurenvparrott 1 year ago
Hi Angela! I'm so sorry that I just saw this video! I swear, you are an angel sent from heaven! I know you are going to improve because you have so many people praying for you. I love you so much and I look forward to your recovery. I'm praying for you every day!
Tanto baci!
Lauren :)
laurenvparrott 1 year ago
Hi Angela,
I wish you a fast recovery. I'm on Tysabri and really do not worry about PML, but it does cross my mind every so often. You are in my thoughts.
Please keep all of us posted. We MS'rs do not get good information on these types of things, especially videos like this.
Take Care,
Dave
MrMDM2007 1 year ago
@MrMDM2007 thank you so much, dave:)i will fight and win this:)
hugs,
angela
angelusa73 1 year ago
Our thoughts and prayers for you, hugs!
Rick.
33rojrsr 1 year ago
I'm so very happy for you that you caught it so early, and prospects look so good! I just had my 22nd Tysabri infusion and had a PML scare with some symptoms, had an MRI and they said no, just a mild relapse. I'm glad they know now how to tell the difference of the lesions. My main fear has always been the cognition problems, which is why I went on Tysabri in the first place. Surprised you say it was Tysabri causing yours? that's new to me. All best to you and yours!
etymon2 1 year ago
@etymon2 Dear Theresa, we are all so different and Tysabri made ua feel in different ways. My cognition problems began when I took the drug, but thi doesn't happen to everyone. Luckily, most people's cognition, gets better with Tysabri. I am "little different :)
Thank you so much fo the wishes. I need them do much while I fight PML. I Aam writung you wuth one finger but I am happy to br able to do this and many morethings. I am still going strong! :)
Thank you so much,
hugs
Angela
angelusa73 1 year ago
@etymon2 you will possibly see that doctors will say that PML will show cognitive issuesfirst...hopkins already told me hat they will look at all of their patients taking tysabrithat have with cognitive problems.maybe, something good will come out of this...I believe so and I hope so!!!!!!!!!!!!!!!!! i hope it can teach something good to neurologists:)
thankd for the wishes,
hugs,
angela
angelusa73 1 year ago
I'm sooo Sorry sweetie. I have had plasma pherisis 2 times. So I understand. My husband and I are praying for you. Please contact me.. Love, Theresa
violetmatthers 1 year ago
Thanks for the video, I hope you will get well soon
Take care
ernahnotme 1 year ago
Hi Angela, Thanks so much for your informative timely video. I'm so pleased you are doing well considering ......My thoughts and prayers have been with you. Special thanks too to your husband. I pray you keep improving. My thoughts and wishes are with you at this time. Regards, Robyn. (51jessica51).
51jessica51 1 year ago
Are they giving you antiviral injections to combat the infection as well?
I wish you better Angela and I am so sorry you had to go through this.
whyworryabout2moro 1 year ago
@whyworryabout2moro they offerered them to me. druga are always offered, even if they hurt the body more...i am waiting to find out my virus count. and do another MRIand boloos test...yes, they di offer it to me.
angelusa73 1 year ago
This couldn't have happened to a nicer person. Our thoughts are with you. Get well soon.
gphx 1 year ago
@gphx thank you so much:) i apreciate your nice word:)
hugs,
angela
angelusa73 1 year ago
@angelusa73 i mean words...thanks:)
angelusa73 1 year ago
your strength is an inspiration, not only for people with MS... God Bless...e nn mollare mai ... sei grande!! Patty
unmarediemozioni 1 year ago
Thank you for making this video! And i do agree that lumbar puncture is not a big deal, i have had it only once, but i had an excellent tech. It was over within a few minutes and it didnt hurt. The biggest thing to anyone getting LP is to remember that when they tell you to curl up in a tight little ball with your chin on your chest, it is for a really good reason...to seperate the vertebrae for the needle to pass through.
I think you are a true MS champion and i am praying for your full recov
kollette27 1 year ago
Dear Angela
Thank you for making this video. I think of you and Keith often wondering how you are doing. My prayers are with you.
Karen
TGHEMR 1 year ago
We're praying for you to get better soon, God bless you
Zomorodah1 1 year ago
Dear Angela, You are an amazing woman who shows so much strength to many of us, it is your positive attitude that is going to help you I admire you so much. Diego and I wish you a speedy recovery and we pray for the best..
All our love
Christine and Diego
bearfan62565 1 year ago
Thank you for sharing so much with us. You have the world behind you.
I hope and pray for your health to improve.
AKA Johnson (but not really)
boazingy 1 year ago
Thank you Angela: keep faith and be well; all will be fine :)
Cheers!
MikalinaJ 1 year ago
you are so brave, cara Angela. Continued prayers---Joan
Cheerleader4MS 1 year ago
my prayers for you dear pioneer sister ms'r
mandi7and10 1 year ago
Dear Angela,
Thank you for taking the time to make this video even though you are in the hospital. I appreciate it so much. I am on Tysabri and getting ready to go off in the next month (this was planned for awhile). I worry about PML. But your video has given me hope for you and me. Please take care and we will see you at the next video! I'm thankful that you are so lucky! Love, Remy
remy91111 1 year ago
It is so good to see you again Angela! I've been so worried and missing you so much! I'm glad you're still staying strong and positive. Nothing seems to grind you down- you're amazing! I guess we won't be infusion buddies anymore- I'm stopping now too. It was working really well for me, but the risks are starting to far outweigh the benefits now.
I'm sending you lots of love and positive thoughts.
Take care- big hugs to you and Keith (thank you for the updates Keith!),
Harmony
13Harms 1 year ago
Angela, So sorry you are going thru all this. Like you said one day at a time. I'm sad you have to go thru this. Your a strong sweet person and I pray for you.
Love, Christine
christinedavi 1 year ago
Thank you Angela for this, it is important to know. Thoughts and prayers are with you , be well soon. xx
andie221 1 year ago
Thank you so much for this video update! I have been worried sick about you since I found out about the diagnosis! I am relieved to hear that you are in decent shape! Thank God! I am glad you can still walk! That is huge!! I hope you get even better!! Keep your positive attitude and reduce stressers! You remain in my prayers, Angela! Please, keep us updated! Big hug! <3
WithCourage2008 1 year ago
Thank you for the English version. I took Tysabri too and PML scared the crap out of me I worried I had it at one time but my neuro did not believe I did and I cont'd. As far as I know I don't have it and I have quit Tysabri after a sinus infection followed by a lung infection! That was scary enough - I hate meds too, I can't believe I ended up with this stupid illness!
I hope that the plasmapheresis will help you and I hope PML can be stopped!
{{{Angela}}} so many of us are praying for you!!!
SRainbolt 1 year ago
Hi Angela,
Thank you for the update. You look great and I am glad that you caught this in time. I worry about taking these drugs when the people that give them to you don't really know what they are all about or what they will do to you. I fully agree with what you say (you know how I feel about taking drugs). Stay strong and things will get better. Hope to hear from you again very soon.
Take care,
Bill
tazscott14 1 year ago
Then to send your lumbar puncture to the appropriate place to diagnose. I feel these things that happened in sequence were of utmost importance and I wonder if anyone else in your situation would have had that kind of attention. How can we be sure that the labs are diagnosing to such a precise degree as was done in your case? Thank goodness.
support2gether 1 year ago
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support2gether 1 year ago
This was an amazing video. I hope you are getting better and better Angela and I know with your positive attitude and the support you have, you will. I think that it is good that you discussed in the video, your minor symptoms that your husband and then your doctor was so aggressive to pick up on so quickly.
support2gether 1 year ago
Thank you for taking the time to update us, I am so glad that you are doing better! Your video was very informative and your concern for others was evident. I agree that anyone thinking of using tysabri should be well informed on the dangers and not just the benefits. I have been blessed by the drug but I'm well aware of the risks and would never encourage anyone to try it based on my opinion. I look forward to more updates. You are in my thoughts and prayers.
sylnmiss 1 year ago
ti vogliamo bene Angela
stefy74M 1 year ago
THANK YOU FOR YOUR UPDATE !! LOT OF US HAVE YOU IN OUR THOUGHTS :)
I am so very glad that the wonderful medical staff were able to help a very critical issue. Now my cynicism is starting to show ...... only because of this issue these Docs HAD TO HELP YOU. Their butts are on the line now. It disgusts me to no end that Angioplasty IS safe Tysabri IS NOT SAFE. They want us sick so they can live of off us. Sorry Angela but you do not deserve this and these nureos know the risks.
SHIRLEYRENSHAW 1 year ago
Hi Angela, I was so happy to see a video from you and to see you looking and sounding pretty good considering everything you are going through. I love that you still have a sense of humor even in the face of something so challenging. I am so happy that they caught it early and I feel in my heart you are going to pull through this.
Much love to you and you family and for your honesty.
Andrea
MSVlogSupport 1 year ago
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support2gether 1 year ago
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support2gether 1 year ago
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support2gether 1 year ago
My prayers and thoughts are with you, Angela.
lolasphere 1 year ago
Hi Angela, I think about you every single minute. There are no words to express any more than I already have. I hope in some small way my video helped; at least I know of some people that are going to stop Tysabri or look to eventually stop as soon as they can. I hope so much to be able to see you soon. I promise to talk about good things. I love you so very much, so does Mickey. You are in my constant thoughts and prayers. Love and hugs, Judy
donotconcede 1 year ago
I hope you woun't get a really bad Iris attack!! I pray for you and think about you every single day. I'm so glade that it was caught early though.
I always tell everybody about the PML risks. I will talk to my doctor very soon about it too, because this really scares me even more now that I know you are ill.
Oh, and Mark: I think even atheists pray for Angela. Because we all love you, Angela. You are doing a very wise thing to try to take one day at a time. That's the only way. God bless.
Prissie28 1 year ago
Thanks for it all.
Alexknobsob 1 year ago
much love and power for your cure from germany
i think of you a lot and i am sure everything will be ok
love and hugs
janett
cruchinet 1 year ago
irishbear76 1 year ago
You have Prayers of Mark Lamp and that is the only PML I want you to think about.
I cried for about a half hour on my knees when I heard that my sweet Angela was the victim of PML.
I have read what you have read. It says the prognosis is not good for PML.
That being said, (this means you should ignore the previous line)
YOU ARE ANGELA. You are the kindest most beautiful soul on YouTube.
All the YouTube family is praying for you. Jews, Christians, Muslims, New Agers, even some agnostics!!
irishbear76 1 year ago 2
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astronautsandwitch 1 year ago
@irishbear76 Amen to that Mark, my brother in humanity and citizen of the world , may god heal Angela from All sickness, pml , ms , ccsvi ...etc
And the rest of us too, whether it's ms or a simple cold. there is too much pain and suffering in this world but god and his angels are always nearby...closer than we may think. i hope all those who are suffering find some peace and comfort in Him
Amen
astronautsandwitch 1 year ago
Angela, remember, your cells know what you need. Trust your body, focus on your well being. I wish you great health and happiness!
thepasture 1 year ago
Thoughts & prayers are with you, from me & the whole family
damizia 1 year ago
I just want to say thank you for sharing your story, it really touched my heart. I will be praying for you to make it through any future rough times from this without too much difficulty and be well.
floydini13 1 year ago
angela, thank you for updated us, we've all been so very worried about you. Rest and heal, get home to your flowers and place of feeling safe and comfortable. Most of all... again heal and keep us posted. many hugs and prayers are sent your way
xoxo
BrendaRaven1 1 year ago
Angela, My prayers are with you and I am happy to see that you are doing better than I expected. I am currently on steroids for a realpse but I was on tysabri for 8 months and it caused alot of problems for me. Please keep me posted on your progress from here on out. You are a true hero and God is with you I truly believe watching over you. I will make you a cake and send it to you because yoy deserve that and a whole lot more...what is your favorite cake? Let me know...I love you. Stacy
Stacy9286 1 year ago
Angela! My darlin' I'm so happy to see that you are doing well! I and hundreds of others have been so worried about you. May the good Lord continue to care for you and make you well so you may get the Liberation procedure! Love and prayers!
9gabbycats 1 year ago
Hi Angela, Its great to see u.. We are all praying for you and I hope you will be up and home soon..
Praying for you..
Omario
omexmc80 1 year ago
Hi Angela. What a sweet,beautiful person you are!!!! I hope you feel better real soon.
When I first heard of tysabri I was gonna ask my doc for it but a few days later I heard the FDA recalled it!! So never gave it another thought after they brought it back.
Anyways you are a very strong person who will get through this!!! {{{{{HUGS}}}}} Vicki
wiladtaft 1 year ago
Angela so glad to see you talking, I have been very worried about you. So glad your husband was aware of your changes. Would you consider having angioplasty, it sure helped me and I am back to who I was before.
vhoenecke 1 year ago
Angela;
Great to hear from you and I feel you will be ABSOLUTELY okay. Hugs Angela!
vbeachy 1 year ago
Really sorry to hear that Angela … I hope you a quick recovery
Mody ...
medad1 1 year ago
It was so nice to see and hear you, all your positive energy even though you are going throught this. I send warm thoughts that they did catch it early and you have a speedy, complete recovery!
Lauri xo
laurims04 1 year ago
Thank you Angela, I was getting worried but you seem to be doing far better than I feared.
Your strength of spirit is really inspirational.
I think Tysabri is a "pharmakon" - this is an ancient Greek word that means both "medicine" and "poison". Any drug is always a gamble, eh?
I asked my neuro to put me on it last year, but he was unwilling - and now I'm so glad that he was!
Stay strong Angela, and thanks again for keeping us posted. Thanks to Keith also :-)
All the best, Toby xxx
lovingfatalist 1 year ago
@lovingfatalist My neuro was also unwilling too Toby. I was upset at
the the time too. He actually told my regular doc who's a friend of his that he believes there's a lot of "hype" surrounding this drug like other drugs which will eventually die down.
rickileeway 1 year ago
Angela,
I am so glad to see you. You are beautiful! You provide us with such useful information. You are an amazing woman for doing this in the video in the hospital. Thank you Angela......xx
Tori
ToriUTK 1 year ago
How wonderful to see your sweet smile again Angela. You've made my day! You explained everything so well. You are a very strong & compassionate person. Praying you continue to feel stronger with each day.
Big hug from me.
rickileeway 1 year ago
Angela se puoi in italiano grazie mille anche a nome di tutti gli italiani che ti seguono.
buona fortuna
MAURO16858 1 year ago
You are such a strong woman Angela...respect and all the best girlie...XXXX
madysy2007 1 year ago
@madysy2007i agrree with you. DRUG FREE is much better and now i can prove it.
i went to my cranial doctor today and we are ready toi be a team again and to fight this problem so i can back to where e hsd brought me before i took this drug he was the real healwr...not the drug! that caused ne to get sicker...
thank you for the kind comment,
angela
angelusa73 1 year ago
drug free's the way to be. stay strong.
smittty1911 1 year ago
Take care of yourself.
mzdjpb 1 year ago
Angela, Thank you so much for posting this. It is such a HUGE relief to see you and hear from you. You are amazing, you know that? I have faith now that you will be well. Again, I wish you strength and health and love and am trying to send you my energy. Dr Jelinek said that IV immunoglobulins is another option for the Tysabri rebound effect (rebound being something that most don't know about when they begin, as you said). I'm so so sorry youre going through all this. Thank you again. Manda xxoo
missalgernon 1 year ago
Big HUG to you girl. You are such an amazing woman and wow - how much love have people been sending you? I've been reading a lot of the messages. Thank you for your honesty about this drug. Everyone has their own opinions but I am with you on this one! No more for me. I miss my first infusion this week. How ironic that you have a hole in your jugular vein?? Far out! Angela you have a strong mind and a lot of love around that will serve you well. All my thoughts and prayers with you. Kerri xo
kezzcass 1 year ago
Dear Angela,
AM SO HAPPY TO HEAR FROM YOU!!! Am sorry this has happened to you ! I was spared!!! After my reactions from it! I feel I was SPARED! You are such an inspiration to so many and loved dearly for all you do!
Much love and prayers to you and your family
Susan
DON"T TAKE IT
ThePennygirl 1 year ago