My news....Ampyra (Fampyra)????
 

Hi everyone

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?

So glad you got a stable report.....and that you have a Neuro that will listen to you and take you seriously.

I've not taken Ampyra but I did bring it up to my Neuro last time I was there. He said it wasn't for me.....but didn't offer any real explanation as to why. :confused:

Here's a past thread about Ampyra.......http://neurotalk.psychcentral.com/sh...ghlight=Ampyra

Thank you so much - as with all of the 'miracle drugs' it appears to be adouble edged sword.

It isn't on the PBS in Australia yet - and it costs $585.00 a month. I think I will wait until it is subsidised and see what happens then. Hopefully this whole stiff, tight, painful leg thing will be over by then.

Cheers

Lyn