First Possible MS, then question of Myesthenia Gravis....but what about AT?

[Victoryia]

I have a long history of neuro type issues. Undx'd at the time. I have prior dx of FMS. The specialist says the new sx's are not due to FMS and it may be secondary.
Born a preemie (3 months early). Breathing issues all my life since birth. Rag doll type legs from birth thru childhood. Coordination issues all my life. Nose bleeds growing up. Gray hair began at about age 15 (small amount). Did not participate in sports/phys ed when I could get out of it. Problems walking, didnt do so until about age 2. Strabismus as child. Treated with operation.
Begining age 19 began to have discoloration of knees with swelling. Dx'd with Juvenille Rheum. Arhtritis in knees. Not to sure of that dx.
Mid 20s, began having nuero sx's. Leg go numb in heat while driving. Could not hold brake pedal at red lights. First MRI 1 lesion. Went to neuro, no answers. Rheumie said FMS and possibly Mild MS.
Since many neuro issues including Nystagmus, Strabismus, clonus, hyperextending knees, hyperreflexes, gait/balance issues, temporary paraylsis (when I get hot sleeping), waking w/ breathing issues when hot, numbness w/ severe hypersensitivity at times, inability to bend/unbend an arm/leg when I get hot while sleeping, muscle cramps in legs/arms, hearing problems, SVT, MVP, choking on liquids and foods at times, some speach problems at times,  Livedo Reticulitis, Telangectasia (sp?), etc. and no answers.
Last MRI showed 2 lesions, EEG shows several abnormalties, LP no bands, high lymphs and low monos. Having EMG for ? of MG. Now I wonder is this could be Ataxia Telangectasia (sp?).
Any suggestions?

[CCF-Neuro-M.D.-JT]

Sorry, don't know what "FMS" is and I'm not sure it's an official, well known medical acronym. Probably not ataxia telangectasia as it is a progressive disease that usually affects the immune system, causes intellectual decline, and telangectasias are present in the eyes. Doesn't sound like MG either as this wouldn't produce most of the symptoms you mentioned. WIth true hyperreflexia, clonus, and nystagmus, I would be concerned about lesions in the brain and possibly spinal cord. MS is certainly a possiblity (although you should be able to pick it up on MRI + LP especially if you are having active symptoms) as are degenerative disorders affecting different parts of the brain such as the cerellum and spinal cord resulting in a disease called spinocerebellar ataxia. Mitochondrial disorders could also explain some of your symptoms, which can be checked for with blood and urine tests. An EMG may help as you are having some muscle symptoms. COnsider getting a second opinion for a fresh look. GOod luck.

[Victoryia]

Local Neuro I went to says nothing neuro going on, MS Center Neuro says possible Mild MS and wont rule it out. Orhtopedist says neuro issues is causing hyperextending and the skin discoloration. GP says talk to neuro as in his opinin it is something neuro going on.

Recently went to Endocrinologist (to ask about the pineal cyst I have) and was tested for Addrenal Gland issues. Blood test was low, 24 hour urine test was normal (but it was my GP who read the results not the endocrinologist). Still no answers on that from the endocrinologist.

[Victoryia]

wanted to add one more thing......

I had what I think to be a seizure about 2 years ago (at the same time the SVT showed it's self. Although I was not even aware it happened until some months later when I realized I was missing a time period that I could not account for.

I was standing in line at a pharmacy/store and there were about 5 people infront of me. I felt this very odd sensation where my senses were hypersensitive (for lack of a better word) and next thing I knew, the clerk behind the counter was saying "Ma'am, Ma'am, Ma'am" to me. I was still standing back as if those 5 people were infront of me, but they were gone. I did not see those people leave, and I have no idea how long I was in that state.

It has not happened again as far as I know. I do not know of any other periods where I have a lapse in time.

Anyone I have told, including the local neuro I went to and the MS Neuro seem to think it is of any issue.

I disagree.

[Victoryia]

I also have what I believe to be a hypersensitivity to medications. I get very weak when taking many of them.

I had in the past also been diasgnosed with chronic sinusitis, and asthma (although none of the asthma meds ever helped over the 5 year period I took them - numerous ones). I also get repeated respiratory infections, sometimes severe.

Allgeries to medications also, including Chest CT Scan Dye which put me into some form of respiratory distress resulting in an ER trip and Prednisone.

[Victoryia]

Thank you very much for your opinion/suggestions.

FMS is Fibromyalgia. I do have 2 lesions in the white matter of the brain which the person reading it reported that it most likely was from Ischemia or Gliosis (sp?). No spinal lesions. Most recent MRIs were done with the new 3D MRI in Boston.

[Enhanced Lesions on White Matter]

So sorry to hear about your symptoms. If you have lesions they could be from something other than MS. There are some specific areas that MS lesions hang out in. Whatever you do have I hope it is something treatable. Good luck and remind yourself to get the follow up MRI's since you have probable MS now.