Hi everyone - as some of you know I am new here and have been having fluctuating symptoms for 9 years and despite MG being suspected after the AChR test it was ruled out....twice! I am now on Neuro#2 and finally having further tests and currently awaiting nerve/muscle tests for my face......To be honest I am dreading them as I know these tests seem a little hit and miss at the best if times and whether these tests confirm my new Neuro's strong suspicion that I do have MG, I think, at some point in my life I will be diagnosed with it, like my Neuro said - There is nothing else it could be!

However, I am we'll aware that this road is anything but simple and you have all helped, supported and educated me with your experiences which, in all honesty, leave me baffled! How can some of you be diagnosed by one Dr and then have another Dr take the diagnosis away? I have read your ER stories and the horrible treatment you have received, some of you during a crisis?! I have never heard of another medical condition where such scrutiny is placed on the diagnosis - mainly through ignorance from what I can see?! I have 2 brothers, one with diabetes and one with nephrology and epilepsy and if one them needed medical assistance to then be challenged or ridiculed as some of you have been I would be appalled and I am sure the medical system would support me - so why is MG any different?!

Sorry to rant but the fluctuating, debilitating nature of MG is cruel enough without this to deal with! Your stories and my own struggles have left me curious and I wanted to ask - how many of you are actually diagnosed and by what test/method (if you don't mind me asking) and also, has anyone had their diagnosis removed and even reinstated again??

I hope you all don't think that I am being nosey - I am just curious and a little sad that we are all going through this AND having to fight for answers and help.....the fight takes up so much of our precious energy that could be far better spent on the things we love in life!x

This is ONLY my personal opinion: Any physician who would order an antibodies test and then RULE OUT MG when it comes back negative knows next to nothing about MG. I personally would never go back to such a doctor unless he or she were the only doctor I could see.

My neuro told me that 10 percent of people with MG are negative on all tests, including the SFEMG. My own diagnosis was based on a very positive response to Mestinon. It literally got me out of a wheelchair and walking again.

If your physician continues to be closed minded, find yourself a better doc.

I had symptoms for probably five years. At first there were mild enough to ignore. After surgery 1 1/2 yr ago, the MG came on so strong and never went away I had already been visiting specialist for a year, so it took 2 years to get diagnosed. And I only got my diagnosis because this forum pointed me to a neuro optomologist and then a neuromuscular specialist, otherwise, I would still be going around in circles.

I am sero negative - ACH and musk. I was diagnosed by a single fiber EMG. MGers are misdiagnosed and treated so badly because the disease is so rare only about 20 per 100,000. That means most doctors - GPs and neuros have never seen it. If you go to them with all these seemingly unrelated symptoms they think you are a hypochondriac or have mental issues. I think this is especiailly true because this and other autoimmune diseases are 4 times more likely in women. I have heard so many times that my symptoms were hormonal or related to menopause or perhaps I need an antidepressant. Unless you go to a neuromuscular specialist at a big teaching hospital that sees MG all the time, this is how you get treated.

kathie

Double sero-negative here, diagnosed by SFEMG. In my case, my local neuro sent me to see an MG specialist. Since I saw the specialist on my neuro's recommendation, when the specialist gave me the diagnosis, my local neuro accepted it.

Abby

If you have vision problems I suggest a Neuro-Opto it seem they DX a large percent of MG'ers.
Mike

I am double sero-negative as well but have had the basic symptoms for about a year. Those included weakness after muscle usage (legs, hips, hands), voice changing and breathing issues, and finally this past April I got a nasty virus of some sort and all went haywire. I started with extreme weakness after muscle usage, double vision and swallowing problems. The breathing got worse and I could hardly catch my breath when talking to someone.

I was fortunate in that with the symptoms I had and the strong response to a trial of Mestinon that I had a Dx of MG in April, and by just 2 weeks ago had a 5 day series of IVIG. Despite some complications with the IVIG, I have noticed a significant improvement in the symptoms a week after the IVIG was completed.

Joe

I am still technically undiagnosed, but I do get IVIG for this mystery illness - going on over 2 years for me - onset post partum- the epidural caused me to almost get intubated, and then a surgical procedure gone wrong a few weeks later and It was all downhill.. My neuro is very close minded - if the tests are negative you dont have it! When I mentioned seronegative MG - he looked shocked, and said yea, guess that could be something - ugh!

I also wonder about seronegative LEMS.. but he is even more close minded to this idea.. however, I get my IVIG.. so I stay there.. whatever I have responds to IVIG.. and I can't breathe or hardly move without it.. sooo who knows

Mentally, all of this would be so much easier if I had the answer - though you still can't predict what's going to happen with each disease name, at least you have some sort of idea... limbo land is stressful!!

I had progressive fatigable weakness in which various rotating myasthenic muscle sets were severely exacerbated by exercise, heat and diurnal variations for over a 3 year period. By the time it all reached a peak I almost needed a wheelchair and could barely brush my teeth or hold a drink up to my mouth. I would get a particle of rice stuck in the esophagus for up to an hour and sound like a drunk by the end of my child´s short bed time story, if I could stay up that long to read it. Mestinon helped tremendously – even at the tail end of all of this whilst going into a slow remission. Here is some of what I encountered as obstacles to diagnosis:

I personally would actually put my own weakness down to´overuse´of muscles at the work place over time and also down to age. I also stayed with a doctor for quite a long time until the final straw for me. Not once was my weakness clinically tested in his office, yet it was gradually deteriorating to the point where I was not able to do the things someone´s 90 year old mother-in-law could do - and I had just passed 40.

MG is a´big picture´disease. A doctor hung up with and scrutinizing only the small details in isolation cannot possibly make a sound diagnosis or refer correctly. Negative tests also do not rule out MG. Unfortunately it is easy for doctors to put patients with fluctuating symptoms into psychosomatic tumble dryers during the diagnostic process. I have been diagnosed twice abroad with a suspected myasthenia gravis diagnosis despite negative tests. Yet when I came home I had to start all over again from scratch. By the time 5 years is over I have gradually gone into remission of all my symptoms all on my own.

So yes! With the success rate in diagnosing MG, it is even possible to go into remission from the disease before you even get a diagnosis for it!

What´s more, for some, the diagnostic process for MG can be so erratic, unpredictable, irrational and demeaning that that process in itself might just be exactly what is needed for you to get that additional psychosomatic co-disease that you never had when you first started with MG and that you wouldn´t have spontaneously acquired either - at least, not until you set foot in the doctor´s office!

Best of Luck


Anacrusis

This is so true Anacrusis!!

Thank you all for your stories, it is amazing the different symptoms, diagnostic results etc! Whether I have MG or not I really hope and Pray that research discovers and more consistently reliable method of testing....and treating this cruel disease...and SOON!

Matilda I wish you all the luck in the world, your story has truly shocked me, no one should have to endure the treatment you have received over the years! (I am female and have already been put in the "Psychological Factors" box - I currently have one foot out, but will not be surprised to be thrown straight back in!)

Thanks again everyone