Tysabri Check In, Support and Information Part Three

[Natalie8]

Wow you guys! I can't believe you are in the 70s now! That seems so crazy, I guess because it means time just keeps flying by. Congrats!

I saw my neuro at the end of October and he also told me a person who was negative on the JC virus test eventually got PML. So Riverwild is right--we still have to be vigilant. Though my neuro said there are about 40,000 people who tested negative (if I'm remembering this correctly) so for negative folks you can now say the risk is roughly 1 in 40,000.

My neuro also told me they are making headway in figuring out more about the JC virus He said more are starting to think the virus might be airborne (in saliva) and it thrives in the tonsils. If this is true, some are talking about advocating a preventative tonsillectomy to minimize your risk of getting the JC virus if you test negative. But it's still not confirmed 100%.

Strangely, I had my tonsils out about 1 1/2 years before I got diagnosed with MS. I told my neuro that the tonsillectomy was brutally painful as an adult (much worse than I ever imagined) and I wouldn't wish that on anyone. But his response was "well if it keeps you from ever contracting the virus, wouldn't you do it?" And I realized the answer was yes!

[SallyC]

I'm in my 70s...oh wait you don't mean...never mind.

Good wishes for you all.

[scrapnini]

Hello,
I am new to all of this. I was diagnosed with MS in May after two one week bouts of double vision.. This diagnosis was a complete surprise, as I had previously had no symptoms. (My father had what was then called chronic progressive MS, so I was familiar with the disease as it effected my childhood and my daily life as my mother's primary support as she was/is his (and now mine) care-giver) Needless to say, I took the news I now had this hideous disease very hard.

I began copaxone within a month of my diagnosis, and had no known problems after the double vision had cleared up. My summer was spent working alot and hanging out with my best friend. (I am 33 and single and an active Aunt to my 4 nieces and nephews)

Late in August my hands quit feeling temperature, which I mostly ignored, knowing I had a follow up appt with my neuro in October; I never imagined what would happen next was even possible.

I woke up Labor Day weekend in complete pain and unable to get myself out of bed. My mom and bestfriend took me to the ER where they pumped me full of steroids and sent me home. A second trip to the ER followed where the nurse accused me of being a drug addict and refused to treat me. Then a third trip which followed the course of the first. My Neuro (don't worry I now have a new one) finally had a nurse respond to my mother's calls a week later... which led to small dose of oral steroids. By this point I had lost the use of my hands and could not walk or stand without support... and still in pain. A MRI showed I had an active lesion on my neck.

After about 3 weeks of this I got in for a 3 day dose of IV steroids, but no follow up from the nuero... I did briefly regain the use of my left hand (to a small extent) and could stand and walk short distances...

By this point a new neuro was found but we had to wait several weeks to get in. Over this course of time, I lost the ability to use my hands and again could no longer walk. By the time my first appointment came, I was nothing more than a shell of a human being. Scared. In pain. And completely shocked that this could happen to a person. A five day course of steroids followed by a fourteen day course of oral steroids followed with very little progress with my condition.

Slowly, I reacquired the use of my right hand to a minimal extent and began pushing myself again to walk. By the time of my one month appointment with the new neuro came around, I was walking fairly well and had acquired some strength with my right hand; however, I still was unable to move my right arm. I have since then reacquired the use of my left arm, but I am still in complete pain. My vision has since deteriorated, and neuropathic pain has begun. There is also much tension in my shoulders and neck making it impossible to get in comfortable positions or wear comfortable clothes. (I'll admit, I have continued to smoke throughout this course. Bad me.)

Throughout my extensive searches on the Internet, I have yet to find someone so quickly and deeply affected by this disease as I have been. This scares me and makes me feel completely alone and as though no one wants to help me. I am scared of everything, from what I eat to what I drink to even what I bath with. The pressure and the stress of not being able to work, not being able to help my mother, not being involved in my nieces' and nephews' lives, and pain that does not subside with any medication has driving me to about wits end.

I am supposed to start Tysabri in two days as the Copaxone was not working fast enough. I am JC-positive. As there's no guarantee the Tysabri or anything else will return me to my normal life, which was taken away overnight, I am sure it is understandable that I am scared and stressed. I am reaching out for anyone who can understand what I'm going through and offer me hope that things will get better, which I am not getting anywhere else. If someone could please offer me some kind of hope and give me any information that indicates that the Tysabri or anything else could take away this nightmare that I have been living, it would b greatly appreciated.

[Grammie 2 3]

I am so sorry for what you have gone through and are going through.
I hope that Tysabri will be your wonderful med!! It started working for me between 4-6 infusions. My symptoms were much less than yours - hopefully it will be what you need it to be!!

Good luck and best wishes
Linda

[Riverwild]

Hello Scrapnini and welcome to our Tysabri thread. I am so sorry to hear all the problems you have had so far. You come into this with more information and knowledge than most people have and while it may be a good thing in some ways, in others it is very scary.

The one piece of advice I can give you is don't compare your Dad's MS to yours. Everyone is different and there are no two courses of MS that are the same.

It sounds like you feel comfortable with the neuro you have now. Many of us ride the neuro-go-round before we find one we can live with and hopefully this one is yours.

I am guessing you understand the whole JC virus problem, since you mention that you are JC positive. While being JC+ can cause problems with people who are on Tysabri, the current thought is that it is considered safe to use for less than two years as long as you have not been on any immunosuppressant drugs. Most docs seem to feel that a period of time off the injectables, "a washout", is a good idea.

Guidance from the drug company is that a short course of steroids is ok as long as you have not been on "pulse steroids" (taking an IV dose one day a month) but you and your neuro have to decide what is best for you.

Tysabri, like any of the other drugs, does not work for everyone, but when it does work, it works very well. While there is no predicting whether you will regain all that you have lost, there's always hope.

You sound like you are being pro-active with your treatment. Try to learn as much as you can, listen to your doctor, ask lots of questions and come on back and let us know how it goes for you.

[Grammie 2 3]

This morning was #75
My left leg has been acting funny-hoping and praying it has NOTHING to do with ms. My R leg is my ms issue ..
Linda

[Riverwild]

Originally Posted by Grammie 2 3

This morning was #75
My left leg has been acting funny-hoping and praying it has NOTHING to do with ms. My R leg is my ms issue ..
Linda

Yay for #75! I had # 73 the same day!
Strange that you mention that you are having funny leg. I had an MRI the day before my infusion, because I am losing feeling on the bottom R side of my R foot. No new lesions, no enhancing lesions, no problems or new findings on MRI. The doc says it could be "tarsal tunnel" and told me to take off the Tevas and wear some normal shoes for a change and see if it changes.
(but I don't waaannna wear shoes! )

[Lynn]

Hi guys

Just curious - do any of you have to 'pee in a cup' when you go to your infusion centre for your Tysabri infusion? Just wondering - the lovely nurse I had at the hospital I went to yesterday asked me, and said that he had read that it was a protocol at some places, since any sign of an active infectious process was a red flag.

I thought that sounded like commonsense - especially since I am JC+ and have been doing this for four years now.

Thanks

Lyn

[Grammie 2 3]

Lynn, no peeing in a cup !

My leg is back to normal-thank G-d !! ms nurse said it did not sound like ms and it just got better
A couple nights before it started up I had a club soda at a bar that tasted funny and that night my L foot hurt and I was shivering under a sheet, blanket and quilt. My son thinks the lines had a bacteria in them and got me sick ?? If so my immune system fought it off !!!!!

Linda

[Riverwild]

Originally Posted by Lynn

Hi guys

Just curious - do any of you have to 'pee in a cup' when you go to your infusion centre for your Tysabri infusion? Just wondering - the lovely nurse I had at the hospital I went to yesterday asked me, and said that he had read that it was a protocol at some places, since any sign of an active infectious process was a red flag.

I thought that sounded like commonsense - especially since I am JC+ and have been doing this for four years now.

Thanks

Lyn

Nope, no peeing in any cups here either. I just have regular bloodwork every three mos. They check for liver and kidney function and the usual comprehensive bloodwork, but that's it.