In the beginning of September I was out of state when I had an attack that caused me to need to seek medical attention. I had eaten a meal, veggie burger and tempura green beans, so not a super large meal. I stood up and passed out. In fact, I passed out four times before I really woke up. My speech was slurred. My friends had me lie down on couch, where I started having pretty violent myoclonus in my neck, weird rippling muscle contractions in my legs and spasming of my arms. Since I was out of state, my insurance would cover ER visit, but not hospitalization! Next day I still felt worn out and had diarrhea, but things got better as the day wore on.
I called the nurse line for my insurance. They suggested stroke and told me not to drive, but get home ASAP and seek medical treatment. A friend drove me home (two day drive). I went to the ER and was admitted to hospital.
For background: Almost 14 years ago I had an attack of Transverse Myelitis in which I became partially paralyzed and experienced a great deal of pain. Thankfully, I did have a substantial recovery. I also have Antiphospholipid Syndrome. MRIs from that time showed a TM lesion at T5 with damage at T5-7, two small lesions on my left Pons and two small lesions on my right Inferior Frontal Lobe.
Three and a half years prior to my recent experience I had a similar attack after a meal out with a friend. That one landed me in an ambulance ride to a hospital. They said my blood pressure was dangerously low. At the hospital they did a CT scan, but they did no MRIs; and I left hospital three days later with no diagnosis.
Well, during my recent hospital stay, they did MRIs and compared them to the ones taken almost 14 years ago. The four lesions on my brain have enlarged and I have an increase of white matter. They also did a Tilt Table Test which successfully provoked another episode of Syncope and subsequent Myoclonus. (They had to pad the rails of the hospital bed.) I was diagnosed with Dysautonomia.
Having Transverse Myelitis, I know that it can lead to a diagnosis of Multiple Sclerosis. I find that I have five symptoms that point to MS. The Cardiologist put me on Crestor and also Midodrine to increase my blood pressure, told me to wear 20-30 mmHg compression hose and drink electrolytes daily.
I had another episode of syncope on a very hot day few days ago while I was seated, which I hear is unusual.
Yesterday I went to a Neurologist who is not an MS specialist. He reviewed the MRI images and told me that the uptake in the brain lesions is not consistent with MS Lesions. He referred me to a "Super Specialist" who treats neurodegenerative disorders. I called their office and was told that this doctor will review my records and let me know in two days if he will see me as a patient. I know two days is not a long time, but it seems an interminable wait when I have this monster in my head. I'm scared and I want to find out what is going on and if there is any viable treatment.