Sorry I've been AWOL lately. Been a busy month.
I was sent to a Cardiologist in the mid-90's after some chest pains. Did a stress test and he said I was 'positive' for blockages, so I had an angiogram. The doctor found that I had an inverted valve.....said it was like Mitral Valve Prolapse, but that it is my tricuspid valve not Mitral valve. Said it was nothing to worry about (yeah right), that it was a birth defect, and to expect chest pains, blood running backwards into my lungs, etc etc. Said that I might eventually need meds, perhaps valve replacement and/or a pace maker someday (so don't worry about it, eh?...hmmmm.)
My GP wants me to see another Cardiologist since it's been 15 years, but wants my epilepsy situation 'settled' (ha!) first. Yes, I do think it's time for a different GP.
Went to see an Epileptologist in Seattle July 1st. I was really impressed with her, one of the most intelligent people I've met. Kind of a good news/bad news/ugly news result. I have a new diagnosis of Myoclonic epilepsy. She did a great job of linear troubleshooting on me, and the new diagnosis fits like a glove.
That leaves the question of whether it's idiopathic or progressive, and unfortuntely things lean toward progressive. That's a little scary.
First time in all these decades when I've felt a difference between the sides of my body during the neurological exam. The doctor placed a cold instrument against my right leg, told me it should feel cold. But it didn't right away. Strange. Placed it against my left leg and it was very cold immediately. Did some more checking, and my whole right side has less sensation now, but it's much more dramatic on my right leg. I've been having trouble walking, and that helps explain why. So I've walking with a cane now. I don't like it, but I have to admit to myself that it helps quite a bit.
Her parting words were: "I think you are doing very badly, and you need to stop everything you are doing." I appreciate that, but I have to have an income. Can't just stop everything.
Needless to say, work has been a problem. Even had the top manager try to prevent me from taking time off for the doctor, and to go to my parents 50th anniversary last week (even though I got his signed approval last October). Tried to withhold the vacation time that I've already earned. Made me furious, triggered 3 days straight of seizures. Just sat on the couch with my eyes closed and sunglasses on (yes, in the house in the dark - it helped some) jerking for hours at a time. I had to threaten a lawsuit. I still come home from work exhausted everyday an my body just throbs. They still require me to do the things I've told them I can't be doing.
Anyway, I'm going back to Seattle the first week of August for another MRI and scheduled for a week long VEEG. My half-sister is going to fly in from Kentucky to sit with me.
The epileptologist doesn't think surgery is an option for me. Sounds like Zonegran is the last med available for me to try, and said that although VNS is not approved for myoclonic, it might be helpful. But my neurologist said that Zonegran is related to Topomax, and I hated that stuff - terrible side effects. Got off it after only six weeks.
I'm generally bracing for having to go through the disability process. *shudders*