Tysabri, MRI, JC test, and Neuro Appt Tomorrow
 

Hi guys

I am in for the full 'service, wax and polish' tomorrow. I will be interested to see if my MRI has changed at all - with all of the trouble I have been having with cramping and stiffness in my calf, there is a strange part of me that hopes there will be something there. Otherwise I will just feel like a hypochondriac because there is no actual evidence.

I am so hoping that I am negative for the JC virus - Tysabri has been my saviour this last three years, and I don't want to try the orals, or go back to the interferons (EVER).

So, keep your fingers crossed for me please.

Regards

Keeping you in my prayers that all is good and you can continue with TY. Let us know how things go. :)

Lynn, I wish you well at your visit. I hope they have some tricks in their black bags that will help you!

I hear you on the interferons- never again.
ANN

Lyn, wishing you my best-fingers crossed :)
Linda

Lyn, here's hoping for a tiny positive to keep you from being a Hypo and a BIG negative for the JCV..:hug::hug:

Ok, so here is the goss - I don't appear to have any major new inflammation, but he did point out a few areas on my spinal cord (they were older ones) as being more noticeable than before. Over all a very stable picture.

The good thing was, when I explained what was happening, and he asked me some questions, he did take it seriously and offered me some practical suggestions. He suggested that there may be some single nerve pathways that were firing off incorrect signals and has asked me to keep a journal to get a better picture of what, where and when (like stiffness, pain, cramps and falls).

He reminded me that (mild) left-sided spasticity was one of my presenting symptoms and told me all about Fampyra (Ampyra in the US). He thinks that will be of use to me - but we should wait and see because of the cost factor.

He also suggested a small dose of Baclofen at night might help and that seeing a physiotherapist may help too.

I feel 'validated' and although I have no idea whereto from here at the moment it is a good feeling.

I should find out about the JC test in a month or so.

Thanks for your support

Lyn

PS - anyone using (F)Ampyra is it working well for you, and does it help with things other than walking?