So I finally saw the consultant again today and got my MRI results. Spinal MRI is completely clear so the consultant said that despite him thinking it was MS at my first appointment he has now ruled it out even though I haven’t had a brain MRI. He dismissed my lower hyperreflexes and asymmetric upper reflexes as ‘possibly normal for me’.
Still have the same symptoms - pins and needles, numb sensations in hands, feet and side of face. Stiffness and cramping in leg/foot. Poor balance/dizziness. Fatigue. Poor memory.
He has ordered blood tests for Vitamin D, thyroid antibodies and bone profile.
He is also arranging a nerve test on my legs. Also mentioned the possibility of doing a brain scan but I’m not actually sure whether he is arranging this or not.
He prescribed me Pregabalin 25mg twice a day for 3 months for the nerve pain/leg cramps.
Thank you Poll and you’re right, at least I haven’t been digned off, I hadn’t thought of that! I don’t know how you managed to stay sane with years of uncertainty. Five months has me going bonkers!
At same place as you, clear mri,in my case was discharged but my gp pushed for a follow up, had bloods some are clear some I am still chasing results for past 2 months, and awaiting nerve study also. Neuro also ruled out ms on basis of mri last year. Clear mri is certainly some good news, but hard to see the good side of things when symptoms are worsening with no answer isn’t. Mine are left side altered sensations, numbness and twitches along with pain and weakness, thats from face to toes… Good luck with your tests!
Hi Aissa sounds like we are in a similar place! Did you have a full brain and spine MRI? I don’t understand how my consultant can go from suspecting MS to dismissing it without having done a brain scan.
I had brain and c-spine, so in my case there is good grounds to rule out ms. As you say, although I’m no expert, without the brain scan you would feel they’re missing an important part of the puzzle!?
I’ve similar symptoms - altered sensation arms/hands and lower legs/feet mainly at night. My spine MRI was also clear but I’ve had 2 MRIs of my brain with 2-3 lesions plus positive lp though all nerve studies have come back normal. I’ve been diagnosed as CIS as, although I had an episode of pins and needles in lower legs in 1999, I only had a lumbar spine MRI so not enough evidence either way. Incidentally, my symptoms are nearly always symmetrical.
And just to confuse things more, my clinical neurological examination was normal. During the day, I am more or less back to normal with maybe some altered sensation in lower legs if I sit for too long.
I guess that just shows how differently MS can behave with different people. Don’t get me wrong I will be more than happy to have MS ruled out I just don’t understand how he can suddenly dismiss my clinical exam which was abnormal and then not even have a brain scan. Everything I have read shows people like yourself with nothing on the spine.
I am currently CIS as only one confirmed episode although did have pins and needles in both lower legs in 1999 but that is not being included at present. Therefore, I only currently meet the diagnostic criteria for CIS. I am still being offered treatment though which is good.
I think what I am saying is that if I only had a spine MRI I wouldn’t have a diagnosis. I have normal VEPs too but did have oligoclonal bands in my CSF.
You should probably be on high dose Vit D - my neurologist recommended that at my first appointment. Have you had your B12 checked? Mine was low/normal so I have been on B12 injections since last summer.
I had bloods taken yesterday one of which was for Vit D. Didn’t ask for B12 which I also found strange. He did request full thyroid analysis because I’ve had an under active thyroid for over 11 years but in all those years, when I’ve been well or ill with it, I have never, ever experienced the symptoms I now have. I have to say I don’t feel 109% confident with him