I am so desperate to get help and advise. My story starts April 2014 when all of a sudden I felt my legs go numb and then my muscles were contracting in my legs. This all resolved after a month. My MRI of brain and spine were all negative. Blood work was normal other then low b12 which resolved. Lymes disease was negative. I saw an MS specialist and she felt MS was a home run diagnosis. Right after this my muscles in my thighs felt so tight and still after 2 years they feel the same. Especially if I bend and use them. In 2015 I felt not too bad just stiff muscles and trouble walking up stairs. I felt numbness in my face and my GP did an MRI of my brain and it was normal. Then in 2016 my right leg started to give out at times. And slowly currently my right leg feels weak and if I walk a lot I limp on my right side. Now my right arm feels weak also. My hand is strong just my deltoid muscle has a lot strength in it. I feel my spine recently hurts so much to lie on my back and I cough when I sit too long as it hurts on my right side so I lie on my left. Strange? So my GP is so confused as I have had MRI done so we just did full spine and normal? I am 48 years old, I really think I have been tested for everything and had brain and spine done and normal. Do you think this is MS maybe PPMS ? I am so depressed because I am lost on where to go and this feels like it's becoming physical this year. I have exhausted my GP where to go and who to see?
You should seek another opinion with a neurologist, preferably a fellowship trained multiple sclerosis specialist. Normal MRI scans repeatedly over time would be highly unusual for multiple sclerosis. In progressive (i.e., primary progressive) forms of multiple sclerosis, there may be a paucity of disease seen on MRI (although part of the criteria requires lesions to be identified), and a spinal tap (to look for oligoclonal bands) may be required. I would start with another consultation opinion with an MS specialist, and if that individual does not believe you have MS, inquire what subspecialty of medicine would be best for you to see (i.e., a rheumatologist, etc).
A. Scott Nielsen MD MMSc
Neurologist and MS Specialist at Kaiser Permanente