I’ve been having symptoms suggestive of MS for coming on around 2 years or so. Numbness/tingling/ twitching/body jerks/ burning/shooting pains in fingers and toes/leg pain and generally feeling crap.
Had a mri of brain and spine a couple of years back when it all started but nothing showed. Went back to different neuro a year or so later and he agreed to repeat some tests. Lumbar puncture was negative, VEP was negative and mri showed a single hyperintensity which was not related to demyelination. Since those results I’ve had continuing symptoms. Waking up with my leg solidly numb. Spasms, twitching and worse of all pain. I was getting used to all of that and then yesterday…I got to the bottom of a flight of stairs and I became aware that my legs felt odd, I carried on waking and my legs began shaking uncontrollably, especially if I tiptoed. (My partner filmed it) I got in the car and sat down but as soon as I lifted the back of my feet with just the toes on the floor by legs started bouncing up and down. I was petrified!!
Basically, I don’t know what to do from here. I have a follow up with neurologist in December but it seems ages away. He has a private practice too so could go and see him but I’ve got a million thoughts about everything. He told me when I got my results that MS is unlikely and even said I have only a 0.3% chance of having it, the same as anyone walking the streets. No idea how they work that out. I should add that this is not anxiety or stress related. I am a fully functioning working normal person with a normal life and no more stress and stuff happening then the next person. What happened yesterday has left my legs feeling like they’ve run a marathon. Just pushing my thigh or calf and it feels massively bruised. Im rubbish at being assertive and don’t see the point in seeing GP as I’m already under consultant care.
I properly feel like I’m banging on now but in my quest to try and bring reason and rationale to this, I’m wondering whether it’s worth getting my mri report re read by a different radiologist as maybe that white spot was related to demyelination. I really feel I’ve had such conflicting views from people I feel should be more consistent. I’ve had my GP who thinks it’s MS, a different GP who said she didn’t think it was. I’ve had a neurologist who said symptoms do not sound consistent with MS and a neurologist who said my symptoms sound suggestive of MS relapses. First neuro said my reflexes were normal, second neuro said they were brisk, third neuro said they were normal. I’ve got this all on paper with the letters they send you after appointments. Im scared and worried and don’t know what to do.