How I Got My Diagnosis

It's last Wednesday. I have been sitting in the epilepsy ward of the Lahey Clinic. A couple dozen multicolored wires have been super glued to my head, I am being monitored and video taped 24/7 and have a long tether which connects the probes to the wall. My laptop and cell phone have been taken away. Apparently use of the latter two objects cause the EEG probes to read them as seizures. After the first time the crash cart arrived in my room and found me reading Kos, they took them away from me.

They are used to patients who have large dramatic seizures, are old or cannot take care of themselves. They have twice threatened me with restraints if I get up and go to the bathroom on my own. They are trying to take charge of my insulin regime and had, at that point, managed to make a has of it. I threatened to walk out and sue of they didn't let me do my insulin myself. They relented and I give myself all my injections (even apart from insulin). The staff and I have a fragile détente. AFAIK there has been no progress on my diagnosis except to rule out metal poisoning.

I get a call on my plastic, wired room phone which has so far, only range once:
Me: hello?
MS Person: Hi this is Mrs. X from MS Benefits! We just got your diagnosis and wanted to let you know that I'll be your case worker. I work for Premera and will help you steer through all the paperwork, appointments and therapy. I need to get some information from you is that okay?
Me: Well, I'm in the hospital, and I don't have anything else to do ...
MSP: Great. You're Mark Horvath.
Me: Yes.
MSP: You're currently in the Lahey Clinic Room 7W30?
Me: Yes
MSP: You're employee Number is XXXXXX. Your Birthday is 8/2/64?
Me: Yes.
[After more info exchange]
MSP: Terrific, thanks Mark. Now I'd like to get you set up with a doctor here who specializes in your condition, unless you have someone you're already seeing.
Me: No. No one in Seattle. What do you have down as my diagnosis?
MSP: Oh, Multiple Sclerosis. Why?
Me: ... oh. They hadn't told me that.
MSP: (Oh SHIT Silence) ..... .... ....
Me: So who would you recommend I see out there?
MSP: I'm sorry, I thought they told you. I'm not supposed to give diagnosis to patients.
Me: No problem, I'm seeing the doctors this afternoon anyway. Are there specialists in Seattle.
MSP: oh Yes! Overlake has a whole facility. Would you like me to schedule you an appointment with the head of neurology?
Me: yes please....

and so, in violation of HIPAA, GLB and a variety of other laws, MS Benefits and their cost-controlling eager-beaverism gave me my diagnosis of MS. I talked to my doctors later and went through a bunch of things with them. MS is their current working hypothesis, although after reviewing the tapes they *strongly* recommended I go get a test for Huntington's. They wouldn't run it there because, by federal law, there needs to be "genetic counseling" with a Huntington's test and, since I was moving to Seattle, they felt they could not provide this. They did give me some print outs of where I could get this done and re-emphasized that I should do this sooner rather than later, "just in case".

and there it is.

I doubt the Huntington's hypothesis just because AFAIK, my father doesn't have it. This assumes my father is actually my biological father which I have not has cause to doubt until this week.

OTOH, it would explain a few things....

Anyway, that's the story. All other things being equal, I have MS, just like my sister.