Hi, after 14 years of seeing neurologists I now have 3 posssible diagnoses. The first was PPMS, the second was HSP and recently Myleopathy.

I have seen 13 neuros during this time and my latest neuro referred me to a top MS doc in Leeds, but he rejected my referral! No reason was given and my GP is trying to get to know why.

Obviously after all this time, I have very little faith in neuros. Looking at Myleopathy support groups, I see there are several different types of the condition. I have not been given any specific type. Here`s a brief run down of my symptoms;

no mobility at all, but can weightbear a little. been a full time wheelchair user for 8 years.
spasms are mostly controlled with baclofen
nerve pain is controlled by amitriptyline
bladder urgency is partly controlled by oxybutynin

What do you and I have in common and how long have you had these problems?

Polly x