I just wanted to post my experience today and gain any feedback. Went back to see Neuro, who I had managed to get to see Privately , then she made referral to be seen on NHS (to see her). This was a second opinion that I had long been waiting for as I had been told on the NHS that I would not get referred again.
I explained that I am still having issue on my left hand side, both left arm and left leg. Numbness, pins and needles, loss of strength stiffness etc. Had funny episode last week where I could not walk properly and left side has not been the same since all of this happened 18 months ago. Foot goes numb sometimes when I walk, pain in arm and leg.
Still having severe spasms, which either run ‘down’ by body and I jerk forward or my head goes from side to side, and left thigh spasms. Controlling this with Nortriptyline. She said to up the dose to help.
Urine infection and constant constipation, random numb type headaches and little trouble with eyes. Toes burn and go numb, foot cramps, wierd pains in my left side.
Basically she said that because my reflexes are all normal and no evidence of anything on my MRI’s that she does not think this is neurological. She is referring me to a ‘movement speacialist’ and also done repeat bloods today.
I am happy with this, truly I am, as it has taken soooo long to get to see a second neurologist and I have had to pay for it.
However I am trying to get my head around having apparent weaker left side and problems with walking - she could see I was hobbling on my left side and limping a bit. Should I worry if this carries on - should I resign myself that this is just a weird thing and as long as my reflexes are fine, I shouldnt worry?
I asked about the constant pain in my left leg and arm and wondered if I should get xrays etc to see if anything wrong in my actual limbs so to speak. She mentioned possibly be referred to Rheumatology if pain carries on.
I just wanted to post and get any feedback/ simlar experience.
She basically said it could end up being an ‘unexplained’ disorder. I have seen a CFS specialist and have ‘atypical’ sort of diagnosis, but that specialist worried about my spasms and said this was rare for CFS and he had not seen it in his clinic.
thanks in advance and hope everyone has had a good day