Rach, I don't have time to respond right now, too much going on. I thought you'd find this story VERY interesting and maybe helpful.

http://abcnews.go.com/Health/ohio-gi...ry?id=11100570

http://today.msnbc.msn.com/id/304142...y-today_health

Take care of yourself.

Annie

Okay, I'm back. This woman had gastroparesis, they think from a virus, and they implanted a pacemaker to stimulate the nerves around the stomach. Can you remember if something set your symptoms into motion or if they have been there as long as you can remember?

I can't remember - have you ever had a sleep study? I am wondering about a central nervous system issue.

I wish I had an answer or more ideas for you. I can't stand that you don't know yet, at least for certain, what is going on. Is the Mestinon still working or is it only doing just so much?

I'm glad you at least have one doctor helping. You need more!

Are you taking the sublingual B12? That way, you don't have to "swallow" anything and it goes to work in the bloodstream right away. It can take MONTHS to recover from a deficiency, which you obviously had. And who knows how long you had it. I hope you will take higher doses of it (5 mg or more) and a few times a day.

Thanks so much for those sites I have had a look at them this morning and have emailed them onto friends and family as it explains it much better than I ever could.

I dont remember having a virus which triggered it off and having thought about it over the last few months I have realised that I have thrown up undigested food for many years. The first time I can remember was 1993, the second time I remember was in 2000 after my hen night - I was pretty drunk but we had started the evening with a chinese and that came up 10 hours later completely undigested - sorry for being graphic.

I have also suffered with migraines from age 11 and can remember when I had a migraine I would vomit but again during a migraine attack it would be undigested food.

So it has been going on for years but not enough to actually trigger something to say that something isn't right. Its only in the last year I have developed constant nausea and only in the last 6 months has this really developed into the vomitting of undigested food on a regular basis.

Despite requests to Drs to have a sleep study reuest this has been denied, as have requests to see a pulmanologist with a speciality in neuromuscular disorders. As many of you will be aware I have actually been dropped by my neurologist as their is nothing neurologically wrong with me in their oppinion. Funny that I have now manifested a neuro muscular disease.....alongside all my other crazy symptoms.

I dont really use Mestinon anymore, I only use it when my eye drops completely or my face drops or I have breathing issues. It resolves these problems in around 20 minutes. I probably take it once or twice a month now. I had to limit the mestinon as it makes my stomach pain so much worse as it stimulates the gut. Even if I take probanthine it still is excruitatingly painful.

Due to weakness caused by MG? or Lack of food my energy level / activity level has dropped significantly. I probably spend around 6 hours a day out of bed maximum. The rest of the time I am asleep or resting. So my need for mestinon has greatly reduced becuase of this.

I dont take sublingual B12 I am taking 50MCG of cyanocobalamin a day. I supposed to take them in the morning but I usually find my nausea is at its peak then, so I wait until it subsides and then take it. I dont think I am processing it as well as I was as my feet have started to go numb again in the last day or so and my hands are worse than normal. I didnt have the injections as I find them so painful - afterwards not during. I had two intra muscular injections back in May and the injection sites have only just stopped being sore.

I am hoping to get some better B12, however I am waiting for a blood test at the end of this 3 month course. I dont want to take any extra as I would like to see what has happened with my serum levels after this course and if I have absorbed enough through my stomach. As if the serum levels haven't incresed dramatically is further proof my stomach isn't working. A b12 deficiency tends to go hand in hand with gastroparesis. Hence why I want it to show up. Once and this may take time ...diagnosed then I will sort my self out with some heavy duty sublingual B12.

I think I am probably suffering from all sorts of deficiencies at the moment I have a crazy sore tongue, with a great big strawberry red patch on it, I think this means aneamia? So again its just more proof that Im a bit poorly lol.

Suev - thank you so much for your post. Fingers crossed 2011 is a better year for all of us.

Love
Rach

ps sorry about the spelling mistakes but Im loaded on morphine!!!

Can't remember rach - have you been tested for Celiac Disease? If so, how long ago was it? If you are on steroids, you may get a negative result even if you have it. You may want to try a gluten-free diet, if you aren't already on one. CD is quite common, and many researchers think that gluten sensitivity is even more common than CD.

Here's a link, if you're interested in more information:
http://neurotalk.psychcentral.com/post8767-2.html
Hope this helps!

Hi,

Ive had the blood tests done for coeliac on numerous occasions and they have come back negative. A few years ago I had bowel biopsies taken and although my bowel was inflammed it was within normal limits. I dont know if they also looked for coeliac disease at the same time.

I have tried a gluten free diet - Ive done it for years at a time and it makes no difference.

Thank you for your suggestion though I really appreciate you taking the time to post it.

Thanks
Rach