Hi Gosia,
Sorry I've taken so long to get back to you. It's 4.30 in the am here and unusually I can't sleep. Since I've been on the muscle relaxers I've tended to sleep 18 hrs a day.
I hope you get some answers from your neuro, mine is not very communicative. I've found out that I have myelopathy from my MRI reports, he didn't tell me. To this day I don't really know what it is. I found out that I have spasming from his registrar when I had an episode in front of her aand she said to my neuro that the spasming was obvious (first time I'd heard it called that). I had to ask three times why my body becomes rigid and stuck in odd positions before he replied "generalized dystonia" and then I had to Google it. I've complained about the pain to him on a number of occasions and the first time he just said that he wouldn't give me pain relief because it would effect my balance and I might have a fall. The next couple of times (over a period of 18months) he didn't bother answering.
When I was in pain in hospital the nurses tried to contact him for four days and he never answered his phone or pages. It was left to my hematologist to deal with my neuro issues. I'd love to change neuros or at least get a second opinion but when I raise the subject with my haem or GP they tell me the neuro is one of the best there is. I'd hate to think what the others must be
like!
My neuro has never ordered an MRI or any blood tests (except the original diagnostic blood test) or Lumbar Puncture or EMGs or any kind of investigation they have all been ordered by my haem. The neuro does do a pretty thorough physical exam, he seems to love poking me with needles to see if I can feel it.
I'm not usually a person who volunteers for invasive testing but it's been 15 months since I've had a BMB and 18 months since I've had a LP (it was quite abnormal) and I'm thinking it's time I had some follow up testing just for comparison.
If it's of any comfort I think there's a difference between neuropathy and myelopathy. I have a combination of the two. Neuropathy seems to be more concerned with peripheral nerves and myelopathy with the central nerves/spinal cord or brain ( don't quote me). I have hyper intense white matter lesions in my brain as well as lesions in my spinal cord so I don't really know what bits cause what effect (once again, no communication).
Some days are better than others and I can't seem to get a grip on cause and effect yet. I did think at one stage that the more I tried to do the worse I felt later (body seizing up) but I have had a couple of times now when I've simply woken up and nothing wanted to work, so I don't know why that would happen.
I'm on NO pain relief. Sometimes I think I can't take any more but I live through it and it eases off eventually. But, next time I see my GP I'm going to ask for pain killers because I can't see any benefit in "being brave". The neuro can't use the argument that I'll fall over, any more because I now use a wheel chair.
Do you have blood pressure problems? My BP today was 88/48 lying down and taking tablets to increase it. I also have lots of salt on my food and have started eating a bag of potato crisps every day (only for the salt, of course
). I'm also starting to have a problem with keeping my potassium up in the normal range but I think that maybe the steroid is keeping the salt (above normal on blood tests) at the expense of the potassium but that's just my
theory.
I have heard them talking about neuropathy in the treatment centre I go to and apparently it's a common side effect of chemotherapy. I don't know if it goes away when the chemo is stopped or if it improves or even goes away completely. Mine is caused by something completely different and I'm told that it's permanent and likely progressive, but I just have to wait and see.
Best of luck to you and. ,yes, it's nice to not feel so alone. I don't really feel as if I belong to this forum but it's the closest thing I can find that relates to my condition.
Hugs
Chirley