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 was diagnosed by positive Tensilon test and positive response to Mestinon and prednisone. Antibody negative and EMG negative. Unfortunate that it took 7 years to get there. Even after being seen by a "leading" neuro ophthalmologist and neuromuscular specialist at a large teaching institution. Weakness was "not physiologic" according to the experts. Hmm.... If I sound bitter, it's because I am.

Doing better now and being followed by a wonderful neurologist. Trying to put the past behind me, but often think that I would have had a better response to therapies had I been treated a bit sooner. Double vision has never cleared, except on high doses of prednisone. Retired early due to all this. Learning to pace myself and enjoy the little things in life.

My first blood test was negative for MG, but double vision kept getting worse. Optha sent me to neuro optha...she said there is a high frequency of false negatives on MG and wanted to do it again. This time, it was positive. Now seeing two different neuros....one in my hometown and one a few hours a way that specializes more in MG. he stated that once I had a positive....it would be not need for ever testing again....

So sorry for your frustration....

I'm not diagnosed, but I suppose I will be some day (I hope soon, since I've been having problems for more than 25 years now). My problem at the moment is that I live in a small country. I have seen all the experts already, and they all say that I don’t have a myasthenic disorder.

I had a diagnosis of 'probably a mitochondrial disorder' for the last 6-7 years (before that I was lazy, depressed, exaggerating, mentally disturbed, seeking attention etc.) but my symptoms have always been very variable. To some extent that can be the case in mitochondrial disorders and I had been explaining away the rest of the variation (just done to much, stress, maybe I’ve got a cold coming). Then I got a really bad period again about 2,5-3 years ago and I wasn’t able to keep up in daily life (which is already quit limited, partime job, no sport, few hobbies, barely a social life). When I started physiotherapy I was shocked to find out how weak some muscles were, I was using lots of tricks to compensate those weaknesses, so I was able to do most daily life tasks, but I was hurting from top to too from overusing my muscles and laying down every moment I wasn’t doing something I had to do.

About three months after starting my rehabilitation treatment I was doing a test with the physiotherapist to try to establish the level at which I would be able to train (since my symptoms seemed to fluctuate). That didn’t go very well, walking with about 5km/h made my legs feel like I was trying to run through a swamp or something like that. Then about a month later I went to see a cardiologist to find out if I had any heartproblems due to the suspected mitochondrial disorder. During that evaluation I had a maximum exercise test which, among other things like heartproblems, also establishes you ability to metabolize oxygen. Problems with metabolizing oxygen is exactly ‘the problem’ in mitochondrial disorder. To my surprise I scored average, this isn’t possible if you have mitochondrial disease in you legmuscles, so my problems with walking a few weeks before could in my opinion never be explained by a mitochondrial disorder.

At first I thought all the doctors that had told me it was all in my head before were right after all. But then I found out about myasthenia gravis. The first two doctors dismissed my idea, they had never heard of a maximum exercise test, they wrote to my GP that I probably had.. a mitochondrial disorder. Although they did test for MG to sooth my concern. Then I went to see the specialist in mitochondrial disorders that I had seen 7 years before, he confirmed that you can’t have disfunctioning mitochondria in September and then have them working perfectly well in October.

Then I went to see the third myasthenia specialist, by then I had already found out that all my ailments could be explained much better by LEMS instead of MG I hardly have any facial, bulbar or eye weakness, most problems are in my neck, trunk, pelvic girdle an leg muscles. I also have: dry eyes (confirmed with a test), dry mouth/thirsty feeling (been tested for diabetes so many times I can’t remember), constipation, orthostatic disturbances (which have been varyingly attributed to deconditioning, my autoimmune thyroid problem, exaggerating etc.). LEMS instead of MG would also explain why I had some reaction to the mestinon trial I had been able to elicit, but not as much as you would expect. At first this third specialist was very friendly and confirmed my analysis that most symptoms fit LEMS. Then I went for another round of EMG tests. Those all came back negative… then he took a 180 degree turn and said this didn’t look like LEMS after all…

Till now I’ve had 3 EMG’s with repeated stimulation (RNS EMG) and 2 single fiber EMG’s One RNS EMG gave a doubtful result, one single fiber EMG gave a doubtful result, the other ones were negative. I have had 2 antibodies test for Anti-acetylcholine receptor antibodies, one for Musk and one for VGCC (LEMS). All were negative.

However I am responding to medication for LEMS (which the last doctor gave me ‘So I wouldn’t feel that all doctors are against me’). Without medication I can’t get up from a squatting position without using my hands, with the 3,4 DAP combined with mestinon, I can do 10-12 deep kneebends (then I get to weak to repeat the movement). I have a feeling the last doctor is thinking of a psychological cause again, because in his opinion all tests were negative (also the ones with doubtful results). I see him next week and frankly I am quit desperate.

Bizarrely enough my diagnosis of ‘probably a mitochondrial disorder’ was made without any hard evidence, it based on the combination of other diseases/ailments I already have been diagnosed with. But with the exception of an eye disease and a hearing disorder all my unexplained symptoms can be explained by LEMS. I also have one autoimmune disease (slow thyroid) and a skin disease that is probably autoimmune in nature. Many people in my family suffer from health problems, which could indeed be explained by ‘a mitochondrial disorder’ (this was taken into account also when I got the ‘probably mitochondrial disease’ diagnosis). But everything could be explained just as well by ‘a dominantly inherited disorder with hearing loss and retinis pigmentosa’ AND ‘a great susceptibility of getting auto-immune diseases’.

So now I am in the situation were I finally succeeded in getting my ‘probably mitochondrial disorder’ diagnosis withdrawn (which took a hell of a lot of effort from my side). The medications for the disease all three specialist say I don’t have now have an effect which is way to impressive to be a placebo effect. But I don’t know if the doctor is willing to prescribe them any longer. And I am about to be diagnosed with a ‘psychological problem’ again. While I was the one who spent almost two years getting the diagnosis ‘probably mitochondrial disease’ withdrawn. Why in heaven’s name would I do that if actually I was having a psychological problem I wasn’t able/willing to address. I could have been on permanent disability benefits by now if I had wanted to. Which would be very good were I live, my financial situation would be about the same as now working parttime. Then I would have had the energy to do the things I like. But I chose not to since I thought I would be able to work and do nice things, since the only possible explanation in my eyes was a treatable disease.