8 years ! How did you stay sane Ally ? Mine has been two years now and it is hard to keep positive. As it has been - I had a few good months during our Winter and I thought perhaps I had been imagining it all. But now with the first of the summer heat I am back showing more symptoms again.

I do not have CPAP at all. The machine was a trial after the sleep study showed the REM sleep problem. I tried several different masks but only the one type of machine. That is all that Dr wrote the prescription for, and he does not want to see me again. I do find that if I take a small amount of Pred before bedtime that I seem to sleep better - so have been doing that. The respiratory dr told me to do that after my lungs started to get mucous. But he then said that was the last appt. I just feel I am being tossed around in circles. :-(

Hi Xanadu,

welcome from a fellow Aussie, I'm in Western Australia.

So sorry you are having a hard time.
Yep the summer heat knocks me for six, I hibernate in my airconditioned unit.
I also understand Drs not caring, I have to drive about 250km to the Perth hospital for my 6 monthly Dr appointment to get one of my medications, and I'm sure he thinks its a walk in the park, wonders why I can't drive up and back in one day!!!!!! (I get my sister to drive me)
Depending on which state you are, there are a few MG support groups who could help you out with good mg neuros, although some people are a bit wary about recommending doctors, not sure why.
Even after nearly 7 years I still see my neuro ever 4 months, so I guess he must be concerned(I hope so anyways) and thankfully they are only a 30minute drive away.
take care,
Kate

Ya, you feel that way because you are being tossed around in circles. Ugh. Actually it sounds like you're just being tossed out the door Buh Bye!!!!

I don't understand why docs don't have any sense of obligation to see the patient through until they're care for. But they don't, one of the hard lessons I've learned in the past 10 years.

Why did they test you on the CPAP and then not give you one? Did i miss something? Can you go back and get one? Go get one!!!! You need it!! Just be patient and take it in baby steps - it'll take 8 weeks to get used it on average.

Have you looked into Congenital Myasthenic Syndromes? Didn't you say that you had symptoms at the age of 10? There are several different types and do not result in a positive antibody test. And then, for instance, in familial limb girld myasthenia the nerve conduction studies and needle emg's were normal at rest but after having the patient run up the stairs three times then showed significant decrement in some muscles. I have a great book which describes the different types of congenital myasthic syndromes. Pretty fascinating. Somebody else who knows a lot more about all this will come along and explain better, but I just wanted to mention it to you.

By the way, the fact that your sleep doctor doesn't want to see you again seems like a mere trifle to be blown away in the wind. In other words, who cares? Call him back and let him know you need to be seen again. And push for a bipap this time.

Also, if I were you I'd take redtail's advice and get hold of the mg associations in Australia. Somebody will eventually help you to the right neuro.



Ally

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.

.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!

My blood pressure went way down on tilt and on the Holter, I got up to 162 or 165 bpm (120 for most of the time during the day I think). They know what it is but they are scared to death to prescribe medication for it I think because they haven't done it before. It's funny because it would be a simple matter to adjust medications even if I did it myself.

You might want to get tested Nicknerd. They have people get tested for Ehlers-Danlos (I guess you know that).

I haven't read through all of your posts but did you have AchR antibodies? (I'm just curious as to the mechanism behind people with Ehlers-Danlos needing Mestinon --and therefore wondering about test results of someone who might have dysautonomia, EDS, and MG).

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.