Last reply 3 weeks ago
Neuro-muscular specialists

Will get to see a neuromuscular specialist at the end of January, I was wondering if anyone else had any involvement from one and what to expect. I have PPMS with lesions in my brain and spinal cord but, it is now apparently inactive.

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stumbler
2 months ago

@nobodyin , I am hoping that a neuromuscular specialist is synonymous with a Neuro-Physio.

If that is a case, they will assess which of your muscle groups are performing and under-performing. They can then prescribe simple exercises to try and bring those underperforming muscles groups up to scratch.

This may enhance your present movement capabilities. Good luck.


grandma
2 months ago

I’m going to see a Neuro-Physio on 14th Jan. Been waiting 6 mths for the appointment. All arranged by my ms nurse. I see here every 3 mths, she asked when I last saw her 3mths ago whether I had felt any benefit from seeing the Neuro-Physiology that she had arranged on my last visit to her, she was cross to put it mildly when she discovered that not only had I not had an appointment but no word from them. She emailed them there and then in front of me and was quite shirty with them! I see her on Friday 28th and will enjoy telling her that the long for appointment is happening in 2 weeks time, so will tell,you all the results.😀☺️😍


nobodyin
2 months ago

6 months! That is terrible and I thought 3 months was bad. I get to see an NHS neuro physio on the 3rd of Jan and an NHS neuromuscular specialist doctor on the 31st. I think I know what to expect from the former and am hoping to ask about a baclofen pump from the latter. I really was just wondering if anyone had any more experience of interactions with the latter. I was also hoping to discuss botox and nerve deadening surgery @ the second appointment.
From what I understand my MS is a result of alcoholic neuropathy and is inactive at present, and I have been tea total for 2.5 months. Perhaps I am clutching @ straws, hoping things can be improved from where they are but why not.
I have nicknamed NHS neurophysios unicorns, mythical creatures I heard tell of 5 months ago but, have not yet seen. Good luck with your appointment grandma.


nobodyin
3 weeks ago

Neuro muscular specialist offered no new treatment (I was hoping for too much I think) but, will get to a spasticity clinic and may be offered an alternative to baclofen
has anybody had any experience of the former? or the alternative drugs to baclofen?


stumbler
3 weeks ago

@nobodyin , if Baclofen or Gabapentin aren’t working, then Tizanidine may be an option.

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