Hi Xanadu

been looking on the web and found this site

http://www.myasthenia.org.au/html/news.asp

It refers to the NSW MG suppport group, couldn't find one in SA, but that doesn't mean there isn't one.
Kate

Thanks Guys, I can't really say too much here but I felt that the Associations were like the Neuros and when my tests were negative they stopped believing in me. I do have quite a nice Neuro now and he seems helpful but is not dxing me or saying a lot. At my last appt 5 months ago I had improved and so he said come back in 6 months.

Funny - but I have just been reading about CMS and Juvenile MG and the juvenile type fits me to a T. It was around 10 when I noticed a few things like having weak arms , and not being able to sit at a school desk without holding my head up with an arm. I can remember a school pic from about 13 when teacher told me to smile and I thought I was ... and the photo just shows me growling

So I had about 5 - 7 years of these symptoms at school and some xrays. LOTS of xrays of the chest - they never said why. Then MG was mentioned. I was a bit scared cos I knew of my auntie that was like that. Then ... I seemed to get better. I don't know why. I mean - I was not really well but I was not as sick either.

Now this .. and two Neuros who were recommended by the Associations and who were so bad. I do like my third Neuro so hope I can learn lots of questions to ask him next month.

I am not sure why but CPAP just made me worse. I simply could not breath 'out' with it. The Respiratory Dr seemed to say " I thought it may' and is leaving it up to the Neuro now. I did ask about bipap but he said that would not work either. I am not sure what he means. I do not have sleep apnoea all the time - its only the REM sleep. I can only get the machine for 2 weeks trial and then have to purchase. So - do not want something I cannot use.

Hey Xanadu,

My bf uses a cpap as well for sleep apnea...I tried it once, and I felt like it was going to suffocate...A bipap is definately the way to go if you have apnea and a neuromuscular disorder...When exhaling, the pressure is reduced, so that you're not fighting the force of the air to get your breath out...

That is exactly how it felt. I really could not breath. In the Hospital she kept trying to use other masks and kept insisting I could manage it if I tried harder. And I couldn't. My Respiratory Dr said bipap would not work either so I am a bit confused now. Lately I have been taking more oral steroid at night and that seems to help me sleep better... It is hard to know what to do.

I see what you mean! I sorta see what your doc. is saying about the machines, including the bipap, because even the bipap pushes out air when you're exhaling, although the pressure isn't as high as when you're inhaling...It's harder when breathing problems are caused by muscle weakness...

The reason I even heard about bipap is because I used to talk to quite a few people diagnosed with ALS who used them (this is when I thought that I had ALS, not MG...bad bulbar symptoms)....They seemed to do okay with them, and at least at some point, they have a much weaker forced vital capacity on a regular basis....It's worth it to give it a shot for sure! It's better to try and get some air, then to assume that it's not going to work before giving it a try...If you have sleep apnea, you have the right to use some device that will ensure you're getting enough air at night!

Do you mind me asking why you're taking the steroids? If it's personal, just ignore this part!

Ttys!
Nicky

Hi, I was wondering ,did the doctor say why he didn't think a bi-pap would work for you? I can't use the c-pap either. I use the bi-pap. It's so much easier. I had Narcolepsey for years before I was told. When my old pulmo. left the area, and referred me to someone else, the new guy goes, "So, what are they doing for your narcolepsy "???????? I thought he made a mistake, and had someone elses file. Then he showed me. Um was never told! Not only did the testing show I was possitive, so did the blood work show I had the narc gene. Since that time, I now make sure I ask questions after a test, and even ask for the copies of everything right down to blood tests. I read them over, and if I have a question, I ask.
You may want to do this as well. Sometimes, we have to be our own avocates .
Best of wishes to you. I know it's a long hard road, but hang in there, they'll figure it out sooner or later, hopefully sooner.
Much Love
Lizzie

.Xanadu,

What you describe regarding having apneas during REM is very typical. I didn't realize that myself until I dragged myself into a neurologist/sleep doctor who explained it to me along with the other results of my sleep test. What happens is that during REM we are essentially paralyzed, all muscles are shut down. All muscles except the diaphragm which is obviously need to breathe. We have other breathing muscles too, but during REM sleep it's the diaphragm basically going it alone. Obviously, if you have mg and your diaphragm is weak that's going to present a problem. But even if a person does not have mg but just ordinary sleep apnea, it is during REM that the problems present themselves because the diaphragm is struggling to breathe against a throat that has collapsed.

When a person is diagnosed with sleep apnea and mg they are always given a bipap. When I first went to see my sleep doc he told me because of insurance all he could do was give me a CPAP, which was better than nothing although I did really struggle to breathe out against the pressure. I had very severe apnea, my oxy sats were dropping into the 60's and I wasn't breathing for over 45 seconds repeatedly all night long so I took what I could get. As soon as I got the official mg diagnosis I went in to see him and he told me great, let's switch you up to a bipap which will also gives some breathing support. I love my sleep doctor!

I want to encourage you to try to get help with sleep apnea. It is a very, very damaging disease. If you look at the survival charts for people with severe sleep apnea 10 years out it is absolutely hair raising. In addition, getting sleep apnea taken care of will make you feel so much better during the day. I don't understand why your doctor would give up after the first time. EVERYBODY feels like they're suffocating when they first put on the mask! That's why they made the "ramp up" feature on the machines. Also, you have breathing troubles which is going to make things worse. I know you're struggling to get a diagnosis and in the meantime no one is taking you seriously. Trust me, I've been there. Still, it seems like if they've seen that you have sleep apnea then you should be treated forthat.

Ally

Hi, I'm from the dysautonomia forum. Recently, I've lurked here and posted occasionally because people on that forum also use mestinon, have trouble in the heat and difficulty breathing.

I find that I am in a similar situation. I am having extraordinary difficulty getting medication for my problem. It will be several months at least before I get in to the specialist and can get mestinon.

I have a sort of "different" belief system from some people: I think that people can get sicker or even die from lack of treatment even where "ostensibly" perfectly proper "medical protocol" is followed. I also always imagined I'd only be "diagnosed" at autopsy. I have difficulty breathing on a lot of days, I feel like I will stop breathing at night, and doctors will only give me medications which are contraindicated for my condition in the name of proper procedures (I nearly collapsed with dental anesthesia which they will all still swear I shouldn't have a problem with) -- and will not give me the ones I need.

In light of my weird world view, I am now using nicotine or Huperzine A (depending on the day) (and refusing medications which make me sicker). Nicotine and Huperzine A help me to breathe when I can't. I am extremely careful about how much I use and start with very small quantities.

I don't like using herbal remedies because they are not approved and I don't like using nicotine. But I'm not getting awards for my views, my doctors will only give me medications that hurt me, and at the end of the day, nothing compares in delight to breathing without thinking about it ...

This is not a recommendation for what you should do but I did want to share how I am coping with a similar dilemma.

(I'm expecting a lot of angry posts to follow this and comments about how people can't give themselves proper doses -- and in response, I'm just going to say I hate not breathing properly and hearing about other people who can't breathe -- despite going to the doctor and having a real and very dangerous problem which could be diagnosed if the proper amount of time were spent on it).

Hey Heat intolerant!

I don't think that there's anything wrong with what you said at all! If someone is genuinely sick, then they need treatment! I know that disautonomia is hard to diagnose...have they done the tilt test on you? I hear that's the best way to check for it...I have a lot of the disautonomia-like symptoms as well (mitral valve, extreme flexibility, BP goes down when it's supposed to go up, sweating, swelling, yes-heat-intolerance too, etc.), but they could be caused by other things...Regardless, it certainly sucks to have those symptoms and you really do need to get treatment for it!