Wow! the symptoms you've described sound very similar to mine. You said that they were some of your 'first' symptoms, did more symptoms follow? Also, how long did it take for you to get a diagnosis?

The symptoms I described were some of many that I had. I also had trouble chewing, swallowing, closing my eyes completely(dry eyes), opening my eyes completely, talking, closing my mouth, moving my fingers, walking. My energy would only last a few hours a day and I spent the rest of the time laying in bed, sometimes I could barely roll over. It was terrible. I thought I was dying.

Lets see, my symptoms started with double vision only which progressed after about 1 week into other face related troubles, then after 2 or 3 weeks I had muscle weakness everywhere. I was diagnosed in about 1 1/2 months after these symptoms started.

The Mestinon has made everything so much better. Now all of these symptoms come and go but are not bad at all compared to without Mestinon.

I hope this helps.

Was it Annie who said it takes on average 7 years for a woman to get dx with MG -- and a man ONE YEAR? Many MGers are FIRST sent to a Psychiatrist -- and "cleared". Doesn't always help. It can still take years -- with more and MORE symptoms cropping up -- before you are taken seriously. I hate to tell you this -- but, if I was in your shoes, I'd rather know the truth.

My first neuro doubted that I had MG -- at the time, I only had trouble whistling, no drooping eyelid, no double vision, no trouble talking or swallowing -- but, I was insistent -- I had done research -- he was a nice guy and ran the blood test. I was fortunate, I came back AChR positive.

MG is often progressive, I'm on a "first name" basis with MOST of the symptoms EXCEPT for the droopy eyelid -- I've only had that once or twice for maybe an hour or two when I was BEYOND exhausted.

I think that we do have a couple of Australian members in here -- they might be able to "point" you to the more "competent" doctors. Hate to say it, but where MG is concerned, NOT all docs are created equal. *sigh*

I definately agree with Jana...As a matter of fact, I was seeing a counseller for a year prior to things 'falling apart completely' (speech problems starting). I kept telling her that I wasn't sure how much counselling could help me as no matter how positive I was feeling, I was just so exhausted all the time, didn't have an ounce of energy, and I truly felt that whatever was wrong with me was physical. I continued to see her though since we just couldn't find what was wrong (my doctor and I), and I really did start to believe that maybe it the root was psychological- maybe 'cause I felt so outta control physically, I tried to gain some control at least in the 'mind' department...I had started seeing her on my own volition 'cause i couldn't get to the root of the problem with my doctor, and I finally cracked and stopped trusting my extincts...

Actually, i mentioned my hand symptoms earlier...You know, i've had hand weakness since I was a teenager...My hand would tire out from writing quickly...i distinctly remember having to shake my hand to 'wake it up' and then let it rest for a bit. I just thought that this was normal, and everyone had this 'problem!' There were times when i questioned whether it was normal or not, but how do you say, "does your hand get tired ever?' I was sorta an insecure person as it was, and didn't want to look strange to people... Maybe that is why I have denervation now- it was just left for far too long...I'm 26 now, and I can say that the hand weakness was on/off since I was like 15- that's 11-years- crazy! I then started to have problems with standing for long periods of time. I used to work at a coffee shop called Tim Hortons, and I worked at the sandwich station. I would have to lean over often because something felt heavy in my torso- I didn't know what it was, but I knew that my back would end up killing because of it...This progressed to where it is now- back pain like it's no one's business, leaning on my elbows which has left permanent bruises on them...

Anyway, there's certainly truth in the matter of a long journey between first symptoms and diagnosis- especially if they're ones that we can sorta compensate for, and are super insidious in terms of progression!

Hi Pollyest, I went to Sydney for my second opinion Neuro ..the so called 'expert' and he left me totally mad with the whole way MG is diagnosed.

I could not agree more. I had a reaction to the Tensilon and also the placebo ( heard him tell the others he left some in the line) so they told me it was not MG and ALL my symptoms were normal for a woman my age (45).

I mean ...falling over, unable to carry groceries, walk the dog, swallow food ....

So ..good luck with it all. Keep a diary and take someone to the appts with you who can argue with these twerps when they try to make it sound like you are making all this up.

I am into my fourth year now of waiting for a diagnosis. They have not even tried Mestinon yet. I am getting worse again now its summer and I nearly choked again this morning and cannot breath outside and have to sit under a cold air conditioner all day...

'course ...this is all normal for us woman

Hi Pollyest welcome, another Aussie, YAY!!!

I really feel for you, I went and saw a optometrist as my GP was baffled at my symptoms. Between him and a opthalmologist I was diagnosed, in fact I recon just the optomotrist could have diagnosed me he was so amazing, am still seeing him for my yearly eye check up.
I hope you get some answers soon
take care
Kate

After seeing my neurologist today he informed me that my SFEMG came back normal and as such I don't have MG. That and the fact that my scans and nerve conduction studies were also normal. My question to you all is what about the fact that i responded to the ice test and the tensilon (and the placebo as well though)? Is there still a chance I could have mg? the blood test to detect antibodies hasn't come back yet but my dr doubts it'll be positive because he's adamant that the symptoms i am experiencing are due to some emotional component (what exactly he nor I are aware of). I believe he came to this conclusion the very first time I met with him. He said he couldn't find any evidence of a muscle or nerve disease - I was very relieved to hear this - and that my symptoms should just disappear over time without the need to take any medication. His only advise was to try and get on with my life and suggested I see a clinical psychologist if my symptoms persisted. Thankfully I predicted that I would reach a dead end with him and made an appointment with a different, hopefully more helpful neurologist for next week. I am so frustrated because I KNOW there is something wrong. Maybe it's not MG but I also know that emotions can not be solely responsible for the way I'm feeling. It's a lame excuse for not really knowing what's going on!!!

Sorry you found a 'dud doc' on your first go around - but it's not uncommon. Hopefully your new neuro will at least be helpful enough to listen to you without the 'she's a women and she's depressed' baloney. I got that from the rheumy they sent me to first (doc said, 'your blood work was normal but you probably have fibro or CFS. I can give you a script for Lyrica!' I refused and couldn't get out of there fast enough!!)

Re: your tests. For what it's worth, I am sero neg, didn't quite flunk my SFEMG; reacted clasically to Mestinon - - and have a neuro (my second) who had no problem whatsoever dx'g MG.

She herself did the SFEMG (after the blood tests were already back). And when I just barely passed, her comments was D---, I hate it when this happens......but it really doesn't matter. Clinically, you are MG. We're going to start you on Mestinon and take it from there!

That was this past June - and so far so good with the Mestinon; although they have had to up the dosage (Nov.).

Like me, you know your body is not behaving quite right - you just need to go through whatever is necessary to find your right partner in the medical community. Once you find him or her, everything will begin to fall in place.

Good luck with your next one!
Sue

Pollyest, can you get the blood results sent directly to YOU and/or to the NEXT neuro? I think that somebody (Annie??) mentioned that she DID have positive results, but it was somehow "lost"for YEARS -- maybe an "arrogant" physician?? I used to trust ALL doctors -- MG has made me very skeptical. I now have TWO neuros that I do trust -- a regular and a specialist -- but, I've THROWN AWAY about half a dozen neurologists!!

WHY did he suggest a clinical psychologist?? Why not a psychiatrist? Doesn't THAT sound a little odd? If your symptoms are psychosomatic, you might need meds -- and ONLY a psychiatrist could prescribe those.

The "thing" about MG -- a TRAUMATIC event OFTEN makes it "rear its ugly head". You can have MG for years and not know it -- someone dies -- and, suddenly, all of these symptoms FLARE. TOTALLY normal. Search Aristotle Onassis.

Pollyest, If you makes you feel any better - your Dr sounds exactly like mine. He can see nothing wrong and as the tests are normal - I do not have MG. I can argue until I am purple in the face about how the muscle strength varies through the day, improves with rest etc - but unless he can see it happen - it does not exist.

I am impressed by the fact you can see a new Neuro next week. I am back to my GP next month .. and may try another Neuro but each time I do this,I have to wait 3 months for an appt as a new patient.

I am also wondering how people get Mestinon when they are seronegatives. My ( ex) Neuro flatly refused as he said he cannot prescribe it until I have a positive test result.

I am wondering how Australia can be so backward when it comes to MG.