Rach,

I am just sick to my stomach for you.

I know exactly where you are - that awful dark, paralyzed, hopeless feeling. Nightmares aren't this bad.

Here is the one fact that we know absolutely for sure: You Are Sick. There is evidence inside your body. Maybe the right test has been discovered, maybe it hasn't. But that's not your fault. If a test is negative and you're sick - then it's the wrong test. This is a basic, simple fact that the medical community seems entirely unaware of.

So either the disease can be proven or it can't be proven. Sometimes I think we undiagnosed people would have been much better off before modern medicine because people were just sick. There didn't have to be an explanation. Now we feel dismissed, sneered at, all alone if there's no explanation.

Here's the thing: it can't be proven when all the doctors shrug their shoulders and walk away. And that doesn't just happen in your country: I've been to almost 40 doctors and despite obvious, visual sypmtoms I have yet to find someone willing to dig.

First, take care of yourself: curl up, whimper, keep breathing. Your job at this point is to get through each moment one by one by one. I know it feels like this is the end of all hope but it's not. Stop thinking for a while. Really, I mean that. Thinking at this point is just like getting on the Hopeless Train and riding it into h***. Try to distract yourself with anything that works. Let your mind absorb this slowly.

You and I have kept in touch and you know where I'm at at this point - almost. I haven't heard back from my doc either. But I'll tell you sort of overall what I've been going through the last few days because I think it might help you. As you know the last neuro mentioned a horrible disease. Well, the symptoms don't really fit. But - in trying to research that I came across a video of a neurological symptom and I looked to see if my muscles did that too - and sure enough, yes it does. This is turning out to be a big, huge clue. After 8 years maybe my biggest one. I'm being really vague here because I don't want this on the internet - but I'm going to email you the details. Well, I went through several hellish days because one kind of this disease can be fatal, can be totally debilitating, worst of all it can be hereditary. I sort of lived with that for a few days and then my head came up above the water and now I really believe that if I do have this problem it's not the worst one. And actually, maybe this is my road to getting some help.

My point is that in the last couple of weeks, going through all this I've been astonished at how many disease have overlapping symptoms - many the same ones as mg. I'm not saying that you don't have mg! I'm just saying that I don't understand why the docs say (to you and to me) "you don't have mg" and then just walk away.

I think Annie's right. I think you need a fresh start. I think you shouldn't give up hope either. Start again. See what the report says. List all your symptoms. Send them to me and to others here. Maybe it will ring a bell with someone. The symptom I have discovered, well it boggles my mind that nobody had discovered it before. It boggles my mind that not one neurologist had ever mentioned this group of diseases as a possibility. Even if it turns out that this is not what I have - my symptoms fit so well it should have been brought up as a possibility. Okay, I am going to generalize here, and this doesn't apply to all neurologists and certainly not (I think) to the last one I saw but: these guys are very concrete thinkers and I swear they don't have ideas. They cannot pull things together and make diagnoses. They just are not cognitively set up to do that. They memorize short lists of symptoms that must match exactly - and then they forget the little boxes and they're too narcissistic to realize they've lost their knowledge and then they have no tools at all to diagnose. Add to that the fact, as Annie said, that they can't stand to be wrong - literally, psychologically are incapable of being wrong and therefore extremely reluctant to give a diagnosis even if they have any ideas and, well, the patient is in a tough spot. You're going to have to do this on your own. That's the bad news but the good news is that this is not the end of the road for you.

I know that you're also in a difficult position because you need referrals and permission to see specialists. I'm sort of at the opposite end: I can see anyone I want according to my insurance but they still ask for referrals and right now I have an extremely uncooperative gp (who after 8 years of horrific symptoms still doesn't get how sick I am). My biggest problem though is that I'm paying over $1000 a month right now for insurance plus another $4000 out of pocket per year and I can only hold out for a few more months. So in my view neither system is working for us. And I do think that a great many of us end up dying, or committing suicide or in some way just crawling away and in that way are no longer problems for "the system". I do think though that if you keep making noise and keep persisting, somehow some way you're going to get a breakthrough. You don't have an end date on your coverage, you have unresponsive coverage. But at least that buys you some more time.

Okay, I'm going to email you now with my details. Please try to hang in there! Know that we're all thinking of you.

Lots and lots of hugs,

Ally