I know that you are not up to anything right now, Rach. I thought we could pool together some ideas to help you - for when you are recovered enough to think. I'm going to start all over, pretending I don't know what's been done.

Okay, so you have fatigable weakness. You have ptosis and double vision. The ptosis gets better with rest, cold, Tensilon and Mestinon. Right? Any other odd symptoms that would help us? It would seem highly logical and probable that you have some kind of acetylcholine issue. Did you know that they can test for the amount of acetylcholine in your system? No, they probably didn't mention that. And it would seem that LEMS and CMS would actually need to be ruled out by doing those tests, which include the CMS blood tests and LEMS blood tests. You would think that a standard muscle biopsy would be in order. ALL of the books I've read say that MG/CMS cannot be completely ruled out, when there is clinical evidence of those diseases, until they do a biopsy and blood tests.

Have they done an MRI with contrast? That would probably rule out anything with the central nervous system, brain circulation, brain tumors, etc. as a cause of the above.

I believe they've checked your thyroid. Have they checked your cortisol? Have they checked a comprehensive chemistry panel, which would include electrolytes, liver and kidney function, etc.?

One of the things that struck me when I read your website is that your BP was so low. Was it dehydration, since it went up after you had water? Or something else?

Have they checked your B12 level? Celiac disease antibodies?

Have they looked at your stools? I know, gross. But parasites, etc. can cause problems. Have you seen an infectious disease doctor about possible lymes or other infections?

You have had major surgery of your GI tract, correct? Well, if the vagus nerve was damaged in any way, chances are you could have a loss of acetylcholine from that. Acetylcholine is "produced" there.

This may be farfetched but I had to think of all ideas. Isn't there someone, anyone, in your country that would be sympathetic to your plight and take your situation to the media? Are there any celebrities who are into health issues/not into the NHS? Branson is a little wild but you never know until you ask someone. They can always say no but what if they say yes? When I tried to raise money for a non-profit, I found that most businesses like to give back and that hardly anyone actually "asks" them for help.

http://www.virgin.com/richard-branson/

Have you had a sleep study? What if you have central sleep apnea, which would implicate CNS/brain stem issues?

When you have time, it might help you too to list all of your symptoms and when they began. On a separate piece of paper (or computer page), list all of the tests and results you've had, including things like breathing tests.

There IS an answer here, Rach. I'm much more hopeful about that than I am about your some of your doctors. I think the worst part about this, other than you suffering, is that they think they have done something great by ruling something out (if indeed it's ruled out). They haven't done anything to figure it out and rule something in!!!

Anyone else have any ideas? You guys are pretty brilliant. Rach really needs as much help as we can give her right now. Thanks.

Annie