Discouraged and frustrated.

Firstly, I think going to a neurologist is a waste of time. Dr. Ginsburg didn't send my records to my hematologist (Dr. Kingsley) and even though I made the appointment today for the "specialised" neuro (Dr. Brown) on his behalf, he didn't send records there either. I made the appointment three months ago. It's like, what the fuck.

So this new neuro specialises in epilepsy. I said flat out that I didn't think I had epilepsy, and I told her my history and why I was there. The numbness, temporary blindness, all of it. And she said, "Well I don't know what it is, because some MRIs say there are white matter changes and some don't".

[Note: Dr. Kingsley says its from minor strokes. Dr. Ginsburg says it could be migraines or epilepsy...even though every test he's given for it has been negative. Dr. Brown says maybe multiple sclerosis, but MS is known to be the most often-used misdiagnosis for people with APS, my type of clotting problem.]

After taking my history down, Dr. Brown says, "Since Dr. Ginsburg didn't send your records I'll just assume he thinks you have epilepsy, because that's what I deal with." So she wants me to have an "ambulatory EEG", which is a very expensive (several thousand dollar) test that I'll have to miss work for. I really dont want to. It's such a waste. Why cant my physicians agree?

Dr. Kingsley was a little frustrated when I saw him last. Ginsburg hasdn't sent him any files, records, updates, nothing...he didn't even know I was still seeing a neurologist. Let alone two of them. And there's now muscle weakness that's seeming to worsen...I don't know. I'm so frustrated. I hope this test shows nothing so it's a big fucking waste of money and Dr. Ginsburg will finally get off the epilepsy deal.

I see Dr. Kingsley again Monday. I'll ask him why there are changes on some MRIs and not on others. I hope he knows. I hope I get a definite explanation. I'm just so sick of all this.