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Old 03-26-2012, 11:41 AM #1
Grammie 2 3 Grammie 2 3 is offline
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Lyn, wishing you my best-fingers crossed
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Old 03-26-2012, 01:04 PM #2
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Lyn, here's hoping for a tiny positive to keep you from being a Hypo and a BIG negative for the JCV..
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Old 03-27-2012, 03:17 AM #3
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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?
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Last edited by Lynn; 03-27-2012 at 03:18 AM. Reason: Spelling
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