I had a neurological attack a year ago. Numbness, tingling, my muscles started to contract, and a tremor started. This lasted a month then resolved. I had low vitamin b12 at the time which we thought was the issue. I had 2 brain MRIs and spine MRIs but they were all negative. Then stifness of muscles started and has never gotten better. I have a hard time climbing stairs or bending and getting back up. I have seen a few neurologists and one was a MS specialist. We did an Ecp and it was fine and we did brain and spine again and all were negative. Lyme disease was neg and vitamin b12 was back up to normal. I have numbness that goes and comes and I feel weak in my leg muscles at times and get tired easily. The stiffness is the worst. My question is what else could this be? They all saw no lesions and no MS, but I have had every blood test and all MRIs are negative. I have no where else to turn. What is my next step?
Neurological diagnosis is really all about the history and the physical. While your symptom description is useful, it is by no means an adequate history. If the data your provide is accurate, then MS is unlikely. One possibility based on your description is stiff man syndrome. This is a rare autoimmune disorder related to antibodies again glutamic acid decarboxylase (anti GAD antibodies). Incidentally, these anti-GAD antibodies are also often elevated in diabetics, so this test must be interpreted with caution. Stiff man syndrome consists of painful muscle spasms often in the back and leg muscles typically provoked by stress and strong emotions. The diagnosis is almost always missed early in the disease.
Whatever the cause, your really need to find a neurologist who at least tells you something. Telling you what it is not, is not very helpful.
Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego