Hi Rach, I am soooo sorry for what you are going through. We have spoken before but thought it worth saying again ...and again....

I am catching this thread late and my brain is a bit frazzled but I thought it worth sharing my experience with Tensilon Test. Mine was negative too BTW - I responded to the placebo. It was not a double blind test ... so the Drs had a good old laugh about it all in the minutes after and while I was still sitting in the room feeling ill...

I was given atropine first as it 'makes the Test easier'. I was then given "Med A" , tested and then given "Med B". I reacted to Med A which I was told after was the placebo.

Long story short is that I was told a year later that my family all suffered from a type of muscular dystrophy and that it seems to come on the female line and in every generation. I was tipped off re CMS. I had the genetic test for DOK7 which showed no typical pattern for DOK7 but another pattern which may or may not be diagnostic.

I respond to Salbuterol. I have never been offered Mestinon.

I have no answers for you Rach - but thought it interesting that we both responded to atropine. And yes - I had a similar response to an eye drop once.

I will check your links Annie...

Xanadu, Here is an interesting article that addresses your thoughts somewhat. Google "Albuterol acetylcholine" or "slow channel syndrome albuterol" and see what you can find.

It's possible that you don't have Dok-7 but one of the slow channel syndromes. Did they do the genetic tests for that? There are literally over 100 CMS mutations, for those with too much acetylcholine, not enough or none at all.

http://www.sciencedirect.com/science...7c095023ec4a44

I could never do Sudafed. I wonder if it had to do with not enough acetylcholine.

I hope you guys figure out what the heck is going on with your health.

Annie

Rach, I hope you are doing okay. A bit worried about you, quiet girl!

I thought this was very interesting.

http://www.ncbi.nlm.nih.gov/pubmed/18427534

Annie

Thank you Annie for that it was very interesting.

Sorry I have been quiet, been doing research on the internet and just haven't felt like engaging with anyone. Its hard to describe if I am around people I can talk to them, but I have a real lack of motivation for anything.

I bought a new piece of kit. I got a blood pressure monitor which is yeilding interesting results. I think it is showing quite clearly that there is a autonomic nervous system problem or that I have heart issues. My blood pressure is crashing, recorded 75/44 at its lowest and my vision was all grey and I was lying down at the time. My blood pressure is dropping after eating - that has a name but I can't remember what it is. It starts to drop within 15 mins and then gets steadily worse for about two hours. Which would explain why I have to go to bed after eating my main meal.

My mum found that neural sarcoidosis can give you ptosis that responds to atropine. She and a friend also think dyautomnia could also be a suspect. The blood pressure monitor has yeilded some good evidence, plus it stores its findings, so I can't be accused of faking! Have recorded all my drops on a chart for my GP.

My pulse is going crazy when standing up so like you Annie it could be POTs as well. Something clearly isn't right in this body of mine.

I can't remember if I told you that my GP visited me and I told him about my blood pressure (this was before I bought the BP monitor). He measured it and told me it was fine 118/80. My normal blood pressure is between 110/70 - 120/80. I told him I couldn't make it drop on command! He told me also that mestinon would cause hypotension. However I have found that its used to increase blood pressure in people who are hypotensive.

I am writing to my GP and giving him a full list of all my symptoms in the hope he thinks of something. Hes never actually had a list of all my symptoms before and maybe something may just click with him. Plus giving him web addresses of articles showing that BP is raised with mestinon, this has been known since 2004. Discovered by the Mayo clinic. So I think his drug book was out of date.

I can't remember if I told you on my initial list that my sense of taste has altered and I have a permenant taste of salt in my mouth. I have a loss of appetite due to this and nausea, which has led to me losing 21lbs since January. Which is great as I could stand to lose several pounds but also concerning.

Not so Quiet today!

Love
Rach

I'm glad you are gathering strength and information. That clue about the BP was a HUGE one.

http://neuromuscular.wustl.edu/autonomic.html

There's a lot that can go wrong with the autonomic system. There must be someone over there who can run basic autonomic tests. I worry about you if they were to do the tilt table test.

How long have you had symptoms? Birth? Shortly after?

I think if you can categorize symptoms too, that would help. When they began. Group them according to "body systems," even though some will overlap.

I just hope you find answers. You do know that tonic water has quinine in it, right? Depending upon what is going on with you, it can make you worse or better (makes MGers worse, slow channel syndrome better).

I saw a commercial for the show Being Erica and this guys says in response to life being tough for her, "Sometimes pressure makes diamonds." I laughed out loud. I guess you'll have an entire jewelry store when you're done going through all this.


Annie

Thanks for that post. Ive gone to bed as I had some lunch over an hour ago and started to feel weird. I get a really tight feeling headche and then I feel like my legs will go from under me. Its best I go to bed then! Luckily Hubs put everything upstairs before he left for work.

The blood pressure thing I've had for a few years, its always been sporadic and Ive never really taken much notice or brushed it off as I haven't eaten, got dehydrated or I was too hot. Over the last few months say December onwards its got progressively worse. Its now at the point where its happening every day at least twice a day. Some days its so bad Im in bed all day as my head just feels like its all over the place. Its hard to describe, your there but your not really there. You feel like you are disappearing inside yourself. Sometimes like today I try and battle on, but it just prolongs it so Ive given up!

Ive done a list of symptoms head down and then basic info with them to jog his memory. A lot of it he is going o be completely unaware of because I just put up with them. Also I was concerned it would be clouding the picture. Now I just think theres nothing left to lose. If he has this and I collapse and I get very sick and he hasn't done anything about it then it puts me a position where I can take action against him. I would just prefer he tried to find out whats going on though.

Just done BP 95/62, not technically low here in the UK. Has to be 90/60 or below, but I can feel it. Going to have a break now as my head feels like someone is assaulting it with a large mallett!

Thanks again Annie

Love
Rach

Rach,

I am happy to hear from you, and I am glad to hear that you have a plan. I have been thinking of you.

I keep thinking that I read somewhere about having a taste of salt in your mouth as a symptom of something. It is possible that I am confusing it with a metallic taste in your mouth which can be heavy metal poisoning such as from mercury. I had a metallic taste in my mouth about a month before I got MG (after having an old filling replaced) and have always wondered about the significance of it although my neuro didn't think it was important.

Thanks for the note about Mestinon causing high blood pressure since I seem to be having troubles with fast heart rate and nervousness. These feelings appear to be from Mestinon and is getting bad recently. I am concerned that it will cause more problems with my body.

I hope you are doing well.

That's weird about the salt taste. I had that too - for years and years - when I first got ill. It tasted like a mouthful of salt water 24/7 - so was fairly unpleasant. I never got an answer from a Dr why it was happening. My BP was always low too. And used to drop suddenly and then I would faint a lot.


I have read somewhere that a post nasal drip from a pituitary tumour can do this. I have no idea if this is true or not...

Thanks for the suggestions.

The taste in my mouth changed after having oral thrush. I drank a cup of tea one day and it tasted like I was drinking metal.

Its not been right since about July/August time. I kept thinking it would go away but it hasn't.

Im just fed up right now.

Rach