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Old 02-22-2012, 05:08 AM
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Riverwild Riverwild is offline
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Join Date: May 2007
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Riverwild Riverwild is offline
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Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
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Quote:
Originally Posted by Lynn View Post
I have been on Ty for three-and-a-half years, and it has done wonders for me. I have not had the JC virus test.

So....that is just background....but...my question is, for the last month or so, I think I have been having some new spasticity issues with my left leg when I am walking some distance or when I have been sitting for a while, my calf has been stiff, tight and sore and after a while it has travelled up my leg to the back of my thigh and into my butt. I have also been more tired than usual.

I haven't reported this to my neuro, because I figured that I have had MS for 10 years, and this is probably just natural progression and it is not worth bothering him with something small like this.

Do you think I have gone the right way? Or should I have been in touch straight away. Do symptoms like this raise the flag of concern? Or does it just sound like trivial stuff that I should just accept as "my new normal"? I don't want to cry wolf.

Thanks for you ideas

Lyn
Hi Lyn!
Are you taking anything for spasticity? Does it help with the problem you describe? Have you increased your activity lately? Have you had any back trouble lately?

I'm asking because these are the first questions your doc is going to ask. It's entirely possible he will also call for a full brain/spine MRI, not only to check for enhancing lesions, but also for sciatic nerve impingement or lumbar/sacral spinal vertebrae shifting or breakdown.

I had exactly what you describe a few years ago and I assumed it was MS. My neurologist told me never assume it's MS, rule out other factors, and after MRI, I found out it was sciatica from a bulging disk in my spine. I had to do some exercises, take anti-inflammatory drugs for a few weeks and change the way I was doing some daily activities. Sally gave good advice, always let your neuro know when something changes and lasts more than 24-48 hours.

Now that the test for anti-JC antibodies has been approved, it should be available to everyone on Tysabri. It's a simple blood draw and results are available within 4 weeks. If it's a concern, your neuro should be able to order the test for you.

Let us know how it goes for you!
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


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I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
.

Negative for JC virus antibodies!
.

I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
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"Thanks for this!" says:
Grammie 2 3 (02-23-2012), Lynn (02-22-2012), Natalie8 (02-26-2012), SallyC (02-22-2012)