| Re: desperate for help!!! Okay-here's what I can offer from the research I've been doing. I'm seeking a diagnosis presently as well, but in the meantime I have lots of down-time to try and educate myself!
Fibromyalgia is a syndrome that can mimic MS, but the main symptom is usually pain. (It doesn't necessarily HAVE to be pain-but since you have pain, it bears looking into. It can only be ruled in once everything else is ruled out.
You also mentioned painful jerks or twitches ( I think...) This is very characteristic of a syndome called benign crampy fasciculation syndrome, which causes painful twitches all over your body and can leave you exhausted. In order to get this diagnosed, you need to see a neurologist and have an emg to rule out other causes of twitches such as ALS. Considering your age and that you don't report any major weakness, I would say it is highly probable NOT to be ALS. (So don't even give it a second thought.) You mentioned double vision and droopy eyelids-these are characteristic of Myasthenia Gravis. Has anyone ever worked you up for this?
Also-have you had blood work to rule out an electrolyte, nutritional imbalance? Potassium and Calcium deficiencies come to mind. Also get a B12 level in addition to tests for Lupus, Lyme, thyroid disease, viruses like Epstein Barr-you could have a post viral syndrome. Did you say you'd had a brain MRI? This would rule out MS, tumors, other things of that nature, though MS doesn't always show up on the brain MRI in a few cases. Next I would try to get an MRI of the spine. Neck injuries can cause twitching, dizziness, headaches and chest pain, even facial and eye symptoms! (These are similar to my symptoms as well-that's how I know.)
None of these things are fun to deal with, but there is hope and treatment once you have a diagnosis. I would suggest making an appt at a major University Hospital and go from there. Specialists to consider would be Rheumatology, Neurology, Endocrinology, and Internal Medicine.
Hoping you find answers and relief ever so speedily.
PS-Here is a chart I found on line that differentiates symptoms of Fibromyalgia from Chiari malformation (another treatable condition that could be picked up on a brain mri) and cervical spine compression (which could be caused by bulging or herniated discs, narrowing of the cervical canal, your basic bad neck injuries.)
http://www.nfra.net/Symchart.htm
Blessings. |