Living with Multiple Sclerosis - 2010 Patient Advocate Conference

[RODEMOM77]

Thanks Lauren.

[dolbfadofhadpf]

Hi First of all I think you're a wonderful person and it's great you're making this videos about MS. I been having my muscles of my leg trembling a little, like involuntarly but just a few times a day and my MRI had scars, but six neurologists I visited told me I didn't have it, because I didn't have symptoms and it could have been scars of a disease my mother had while pregnat (she had an eruptive), but this was a few weeks before I started having the little tremblings. What should I do?

[laurenvparrott]

@dolbfadofhadpf Hello! Thank you so much! Oh goodness...have you had a spinal tap? Usually an MRI and a spinal tap will give you a definite diagnosis. That's all I can think of, because you saw SIX neurologists? Wow. I would also make sure to see an MS specialist because they will know the most about the disease. I wish you the very best! Please keep in touch!

[ProtandimAntiAging]

I also have a friend who has had MS for years. Recently, she started using our Protandim product and I can't wait to see the results.

Dr. Perlmutter has been helping people with Parkinson's using glutithione as it helps with oxidative stress. Look up MS and oxidative stress on w w w (dot) pubmed (dot) gov. Oxidative stress is connected to MS. While at that site, look up Protandim and see how it works on cancer, heart failure and MD. All natural too with no side effects. Good luck to all! :")

[flore20ani]

I am so glad to see you're doing so well, I've seen a few minutes ago a video when you were in hospital and I am so glad to see that now you are well. You gave me hope, 8 months ago I started my cure with tysabri after numerous consecutive relapsesand even if I'm not very well I feel the diffrence. You make me hope that someday I'll be again able to do everything I want and feel good. Thank you and good luck!

[laurenvparrott]

@flore20ani Thank you so much!! I'm so glad that Tysabri has helped you! I'm sure you'll be able to do the things that make you feel good again! Stay positive and keep the faith! I wish you the best!

[b1blancer1]

Lauren - I don't have MS, but I know some folks that do. For 15 years now, I've ridden in the MS-150 Bike Tour. By my reckoning, that 2,250 miles I've cycled to help find a cure for MS. I can tell you that me and my fellow riders are acutely aware of what you and people like you have to go through day in and day out. And believe me when I say you are our inspiration to keep pedaling through the miles in the heat, cold, wind, and occasional unexpected rain. God Bless you!!

[laurenvparrott]

@b1blancer1 Wow, oh my gosh - thank you so much for riding for MS for 15 years!! That means so much to us patients!! I really appreciate you writing to me, and thank you for everything you do!! God Bless you!!

[bethanystiles]

Love you lauren! You seem to be doing so well!! :)

[laurenvparrott]

@bethanystiles Love you too! I'm doing great! I hope you are too!

[missalgernon]

I do have MS, and I'm also on tysabri. Like you, I've weighed up the risks and it has worked wonders for me. It was an easy decision to make when I was in a wheelchair and facing worse last year. I'm sorry if I came across as a bit too sceptical in my last comment. I really do appreciate your videos, your positive attitude, and I'm glad you had a good time at the conference. But with Angela getting PML, the reality of the risk I'm taking has hit home and I'm terrified of the implications. Amanda

[laurenvparrott]

@missalgernon Hey Amanda! I completely understand what you're saying. I've been talking to Angela and her husband for the last few weeks and believe me, reality hit home with me too. It is not something to be taken lightly. I just feel that the benefits are outweighing the risks for me and so many other patients. I pray for Angela ALL THE TIME, and for all the other people who have gotten PML. I'm just hoping for the very best with everyone!

[missalgernon]

I'm sure there are some individuals that care about patients, that's why they are employed to convince patient advocates that such a dangerous drug is okay. But in the end, the stocks and profit margins rule. Did you ask the CEO How big his yacht is ;-) MS is big business, with people having to rely on very expensive drugs for many many years. I'd like to hear more about any safer therapies they're working on? Or ways they are trying to mitigate the risks or side effects?

[laurenvparrott]

@missalgernon You sound very intelligent and I agree with the fact that ALL medicine is a profitable business. It's a necessary evil. The people I was talking about really care because they also have disabilities and understand some of the fears these choices can produce. I'm not sure if you have MS but every case is different and we all make decisions based on the quality of our lives. I feel so fortunate that Tysabri has been effective for me and I'm willing to take that risk.

[JoshHewlett]

Hey Lauren- Thanks a ton for mentioning me in this video! You did our signal we made up and it made me laugh out loud for real! Everyone probably thought; "Oh her friend Josh is Deaf (per the hand signals), and he has MS?!?! What a sad little soul he must be" But I am alive and well and speaking like crazy with my Motivational speaking business! We will stay in touch for sure!

[laurenvparrott]

@JoshHewlett Hey Josh!! Oh my gosh I've been laughing for days about our experience in the bar...our signal, the stick between your legs...hahaha! That's so funny, what a sad little soul...I'm so glad you're speaking with your business! That's awesome!! You wife is gorgeous by the way!! I'll talk to you soon!

[JoshHewlett]

My wife is truly gorgeous I know- Serious hotty!

I got lucky and I am blessed!

I just gave 12 speeches in 72 hours, I am

so wasted, holy cow- such an honor though

to speak to the young people of Utah.. It was

all the student governent all over Utah and a

convention they were at! 3,000 students

over 3 days- I love speaking so much and I

am going to start posting some video's! you are

the bomb dig Lauren! God bless

[laurenvparrott]

@JoshHewlett She is a hotty! Oh my gosh, 12 speeches in 72 hours? That's amazing!! You should totally post your videos on YouTube! People will LOVE you!! God Bless!

[markolad]

Hi Lauren thanks for ur video its always so nice 2 watch ur videos I'm going on Thursday 4 my 29th infusion like u I'm gona keep taking Tysabri till they find a cure It's worked wonders 4 me It got me from havin 2 use a wheelchair now and then 2 leading an almost normal live I could never of imagined feeling the way I am now and as for the risk of PML I never think twice about it I only have 2 look back, 6 months like this would b better than a life like that.

Mark x

[laurenvparrott]

@markolad Hi Mark! I am SO HAPPY that Tysabri has worked so well for you! I always wish the best for everyone and I'm thrilled that you're doing so well!! I'll talk to you soon!

xoxo

Lauren

[munsjvc]

Im happy your therapy is going so well and that you care enough to make these videos for others.

[laurenvparrott]

@munsjvc Thank you so much! I really appreciate it!

[fuckyougreaseball]

alright lauren, look i have no doubts they care, its as simple as this. if you choose to take tysabri which i do past two and a half years, the only question that truly matters is "Do you feel lucky punk, well do ya?

[laurenvparrott]

@fuckyougreaseball Hahah, you know, that's true!

[kezzcass]

When friends get PML that is not hearsay, I am surprised to hear you say that. I am sure there are people who are very genuine at Biogen Idec.. this is not really the point. I have stopped taking Tysabri this month. I don't think the company is there for me, in fact the stock exchange are given more information than I am - that's my experience. Those who are truly looking for the cure of MS are the ones who get my vote. I wish the very best for you Lauren.

[laurenvparrott]

@kezzcass Hello! I used the word "hearsay" out of context and I'm sorry it offended you. The reason why I say that people are really caring at Biogen IDEC is because several of the employees have MS themselves. I didn't want to say that in the video, but that's what I meant - they are fighting this disease with us. I agree with you about supporting the people who are looking for the cure, but until there is a cure, I'll take Tysabri since it's working for me.

[MSVlogSupport]

@kezzcass I have to agree with Kerri, I do not believe that they care about us, they care about their profit margin. As for the risks of Tysabri, that is a personal choice and I don't judge anyone for what they feel works for them. Once again you have to weigh the benefits against the risks. I am glad you are doing well on it as well as many other. Knowing that Angela got PML and I have friends that now show the JC Virius and have to decide now whether to stay on it. Good Luck

[charliedonahue]

I've been a Tysabri patient for 3 years, and it has changed my life. With 74,000 people who have prescribed and 70 cases of PML, I'll take that 1/1,000 risk. As my disease progressed rapidly in 2007, it seemed like my chance of disability was 1/5. It's people like Lauren who share their story of hope that helped me make my decision to chose Tysabri. You are a sweetheart Lauren. I likely would have not perscribed to Tysabri before seeing your video series. You're a rockstar, keep being awesome!

[laurenvparrott]

@charliedonahue Charlie, you always cheer me up :) I mean it when I say that I'm so happy we are friends and we've been able to get to know each other better!

[charliedonahue]

@laurenvparrott Lauren, thank you for all the kind words. I am also glad that we had the chance to meet one another. You truly are inspiring. Keep in touch, as it is always great to hear from you!

[ThePennygirl]

Taysabri is worse then MS thats just my thought... But I choose not risk my life with it.

[laurenvparrott]

@ThePennygirl I don't blame you - it is a risk people are taking. I feel that the benefits outweigh the risks, but everyone feels differently!

[laurenvparrott]

@ThePennygirl I understand. Good luck to you!

[Prissie28]

I take Tysabri too, but I'm afraid of PML, cause more and more ppl get it now. So it scares me.

[sevitiger7]

@Prissie28 hi, im from greece, my boyfriend takes tysambre, cant you tell me what is the PML? the hole words... thanks you. :)

[laurenvparrott]

@sevitiger7 PML stands for Progressive Multifocal Leukoencephalopathy. It is a rare brain infection that causes death or severe disability. However, the chances of getting PML are 1 in 1000. Of 74,000 people currently taking Tysabri, there have been 70 cases of PML, but only 14 deaths. I believe the benefits outweigh the risks.

[laurenvparrott]

@Prissie28 It scares me too, but I've been on it for 3 years and I've never felt better. I plan on continuing to take it.

[laurenvparrott]

@Prissie28 It does scare me too, but I feel great!

[zekest]

I take tysabri as you do and Vern Beachy. Now go MSU ! And Iowa Hawkeyes! Even though I live in Columbus,I root for the Hawks! I am faithful as you are with the Spartens who will win the basketball big ten!

Jon Sayers

[laurenvparrott]

@zekest Hey Jon!! Vern and I talk quite often and we're both feeling great! It sounds like you do too! I say, GO STATE, GO HAWKS, GO BIG TEN!!