I am so mad I could spit. So let me get this straight: you can't walk, your eyelids are falling down, you can't breathe, you need supplemental oxygen, horrific things are happening to you, you can't get any medical support, you have been physically devastated yet you've managed to survive all this *but* if you read your doctor's notes you're going to go into a swoon and kill yourself?!?

That is just a bunch of paternalistic baloney. Probably you should also know: if you exercise your uterus will fall out. Huh!

I would like to see how many women versus men are denied access to their own records. It's probably a huge difference. Also: it must be nice to be in a profession where you can cover your little behind whenever you like.

Let me give you just one example of what I've found when I've gone back and looked at my records. My last bloodwork showed that I had elevated alt and ast which are liver enzymes. Turns out they can also be released by muscles and can indicate muscle problems and are two indications of the disease I think I may have. The third is an elevated ck level. Which was also high on the same bloodwork. Good thing I was informed of that, right? Nope. I had a dozen doctors walk through my hospital room and tell me that all my tests came back normal. It wasn't until two months later when I received my medical records that I saw the results.

Okay, to get back to you. Wow, you have a lot of strange symptoms! Just like me (but different) they seem totally unrelated and bizarre. No offense! I think people here have given you some great ideas. I know I mentioned some of this to you in the email I sent you, but all of those systemic problems make me wonder about metabolic disorders. There are so many of them. And since they affect every cell they can cause some funny systemic glitches that seem totally unrelated. Maybe some of them *might* ring a bell to you. The good news is that some of these diseases can be controlled with diet, or at least helped so it would be worth it to at least take a look. Here is a link to an overview of the diseases:

http://www.nlm.nih.gov/medlineplus/m...disorders.html

It's hard to believe that with all your muscle weakness nobody has thought about getting a muscle biopsy done. That is what you would need to get these checked out. There are two types: fresh and frozen (gross, I know). Fresh is best because it's more accurate and more tests can be done on the biopsy but even in the US there are only 2 or 3 places that can do that.

I've looked into this a lot because I've thought in the past that I might have a mitochondrial problem. Who knows, maybe I do. I arranged to have a biopsy done and then backed out because the guy who does it here is an idiot (insisted that mg isn't in any way related to the thymus, etc, etc) and the woman at the university metabolic clinic told me that they don't accept any of his patients because he makes too many mistakes. I'm going to talk to the new neuro about it though. Anyway, in the US the best doc for this is Dr. Cohen at the Cleveland Institue. However, I was getting messages from two mitochondrial yahoo groups for several months and there were a few people who were from the UK. I went back and searched for information for you. Apparently there are 3 centres which can do the muscle biopsies and diagnose these types of illnesses. Here is a link to the website:

http://www.mitochondrialncg.nhs.uk/

In particular, there is a doctor, Dr. Hanna, whose name comes up again and again as a very compassionate doctor who was able to help a lot of people who had been searching for an answer for years and years.

What I am thinking (hoping) is this: wouldn't it be nice if you could get a referral? Even if this turns out to not be your problem, you could at least talk to a doctor who is used to seeing unexplainable cases and maybe he'd have some great ideas and be able to send you to other docs who would take you seriously. By the way, one person mentioned that they just emailed doctor Hanna and was able to get an appointment with someone on his team.

If you want to look into this yourself, the message group on yahoo is called mitoldies. You have to register and then be given permission to look at the messages which I think takes a couple of days. If you then enter "London" into the search box you will find messages from people in your same situation: Living in England and told there was no answer and to deal with it. Maybe you could start posting messages there and get some help and ideas. In the meantime, I will send you the most informative post. I don't want to post it here because the group is private.

I don't know if this will help you, but it's worth throwing out there. Please. just keep fighting, don't give up. And remember - we're all in your corner!


Ally