Hello all,

First of all, please forgive the fact that this post is going to sound a little dark and sarcastic. That's just where I've been living for the last few weeks.

I haven't been posting much lately. The fact of the matter is that I've been on a very strange rollercoaster of a ride in the last couple of months that's been slowly tearing me apart.

To try to make a long story short: I saw an uber-specialist in early March on the other side of the country. The understanding was that I would hear results back in two weeks. One month went by, nothing. A bit of wrangling and what I got was that I shouldn't expect a phone call or a report, but that the neuro would send a copy of a letter he would write to my local neuro. Well of course it's been almost two months and I haven't heard a thing and neither has my local neuro.

The specialist, let's call him Dr. X, a la Rach (hi Rach!), told me when I saw them that he suspected possible motor neuron disease which, while it didn't make any sense, totally freaked me out. So you can see that I've been in a bleak, dark h*** waiting for results.

Fortunately, me being me I went through the back door and requested my medical records which finally arrived yesterday. When I read through them I was astonished.

Before I start, let me just say that there was no indication, as far as I can tell, that I have motor neuron disease. Which is good because I don't particularly care to die that way.

So, first of all, Dr. X had sent off a blood sample to the Mayo and it came back negative for antibodies. I can't say that I'm terribly surprised with that because that's happened before. So far I've had three tests at the Mayo - two of which were positive (slightly) and this one which was negative. I've also had two negative tests from the ARUP labs. One was a big zero while the other showed a slight level of antibodies but not enough to put it outside of the normal range.

Here's the part that stunned me though: the sfemg studies were abnormal. That has never, ever happened to me. The guy in CA only found one jitter. That was the guy who told me to go see a plastic surgeon for my drooping face. (Ya thanks. Moron). I've been completely dismissed because I have never shown anything on any emg test ever. This report shows abnormalities in both the mean level and the percent of pairings with jitter in the frontalis muscle and the percent of pairings (just passing the cutoff point) in the ocularis. The crazy thing is that he wasn't even testing the side which shows the weakness (he said it was too weak to test, go figure). I have to say, even though this guy is unresponsive as heck, he's a wizard with doing the test.

So, I'm in shock. I'm guessing that this means that mg has been confirmed, despite the negative antibody test. At least for the facial weakness anyway. After all that pushing and trying and finally giving up. I would have been delighted 6 months ago, but now I think I have another, more horrible, disease which may have set off the mg. I don't want to put it into a public forum since it may affect other family members and I'm paranoid and have developed a bleak view of the medical profession and insurance companies. But suffice it to say, the disease sucks.

And here I sit. Dangling out in the lonely, undiagnosed, dark abyss that some of us feel stuck in. I'm pretty sure I know what it means, but how strange to have to find this out on my own. The good, wonderful news is that I've found a fabulous neuro locally. She's smart, really super stellar smart, and took it upon herself to review all of my records (that's a lot of reading, trust me), is compassionate, respectful and feels confident she can figure this all out. She is a gem. She even calls me back. Heck, her assistant returns my calls ON THE SAME DAY. Even though I'm looking down the barrel of these terrifying diseases I actually giggled, yes giggled, when she called me to talk over some tests. I had to explain that I couldn't believe she actually called me personally. Anyway, I've faxed over the records to her this afternoon. So I don't feel entirely alone for the first time in 8 years.

Okay, first of all I just want to post this because it's so striking to me that my results have been all over the place. I want people who are desperately seeking a diagnosis to know that. One test doesn't mean diddly squat. Certainly one opinion is not worth a turkey's butt in a vegetarian restaurant. And since I've gotten started I'll say another thing: I have gone to five states searching for help and have seen about 50 doctors, bless their greedy, incompetent little hearts. I can honestly say that every single thing of significance that has been discovered about my health I have discovered on my own. So please, don't give up. Push as hard as you can, for as long as you can until you're either dead or broke (don't know which will happen to me first, we'll see ). Okay, I'm done ranting.

And of course I have some questions:

What's the deal with the disappearing antibodies? Do you think that means that it's really another, undiscovered antibody that's wreaking the havoc? Because even when the tests come back positive the titers are very low, abnormal but low.

Is it possible to have not occular mg exactly but mg that just makes my eyebrow droop and sometimes the entire side of my face fall?

Does anyone else have confirmed mg but no (measurable) limb weakness?

What about respiratory problems that don't show up on pulmonary tests but make me feel like I'm going to die? Anyone else? What's that all about? I don't know if that's due to mg or this other, heinous disease. I'm just going to have to wait for the test results (another 2 months. ugh).

Jitter on the sfemg is specific to mg, right? Is that right? Is there anything else it might indicate?

Apparently I have jitter but no blocking on the sfemg. What is blocking?

It's been an entire day since I first read the report and I think it's finally sinking in. That's how much of a shock it was to me. And the funny, truly funny part is that despite the fact that I have gone from being a sunny, optimistic person who grinned like an idiot and thought everyone was so amazingly wonderful to a worn down, pessimistic nub of a thing - I still underestimated the deep, deeply, deepish depths of callousness that doctors are capable of. I mean, hello, we're talking about a fatal disease when untreated. And I am not treated!!!! What in the heck does it take to get some medical attention??? Didn't I rate at least a 60 second phone call? I mean really, people try harder to save whales. Nothing against whales it's just that I'm a little jealous.

Ah well, and so it goes . . .

Ally