I've been reading this forum for a couple of years, and I've also noticed that we have a seemingly disproportionately high number of seronegative members. I once set up a poll to find out the numbers, just out of curiosity, but I guess people don't really like to respond to polls. It wouldn't have given any real information, anyway, since like Alice says it may be that we seronegatives are over-represented here (since many of us are struggling to get diagnosed) or it may be that we're under-represented (since many are undiagnosed).

I tested negative for AChR antibodies three times, and negative for MuSK and LEMS once each. I think there are a few more antibody tests I could take, but now that I've been on Imuran for a year, it probably wouldn't make sense, and my treatment wouldn't change if we got a positive anyway. But I consider myself most fortunate to have a diagnosis. My second biggest fear was being undiagnosed. My biggest fear was being diagnosed with something psychogenic, like conversion disorder. I know it would make more sense logically to fear the Really Bad Diseases like ALS, but it wasn't a matter of logic.

When I tested negative for MG and didn't have a diagnosis, my first neuro wanted to just keep seeing me every six months, and when I squawked he suggested Prednisone. My second neuro also wanted to just see me again in six months and do nothing. When I came back with my husband and insisted that we do something, he sent me to Boston (an hour and a half away) to an expert, who diagnosed me. I suppose both neuros wouldn't have been so conservative in their treatment if I had had any dangerous symptoms at the time.

Abby

I was actually hoping for my diagnosis to be "conversion disorder". Somehow I think that if my mind has taken over my body, I can find a way to take it back. It is hard for me to accept that this is real.

But when I am late for a pill, I fall over. I had several emergency room visits before the diagnosis. I fell at a music concert in Macon. Went down some stairs. The emergency room people wanted to insist somebody must have pushed me. They were eyeing my husband with suspicion. Then my health insurance wanted to say it was the music venue's fault. It was hard to convince them that I could fall fair and square.

Stephanie
To answer your questions:
1. At the time of my first blood test I was Class III
2. I started Meds when the neuroopto said I had MG even though the first blood test was neg.
3. When the positive test for binding returned my condition was the same as it was when the tests were neg.

That being said my condition has gotten worse. It is hard to tell if it is my MG or the meds. For example the Imuran made me very sick and I lost 35 pounds. On higher doses of Prednisone my legs became so weak I could hardly walk. My neuromuscular Dr said some people can't take prednisone and immediately started tapering me off. So far nothing is working for me. They are being careful with my treatment because of my age (72).

Feel free to ask all the questions you want.
Mike

I think it is sad (even cruel) that there is even one person who would endure years without diagnosis or with thinking these MG problems were in their head (as most of us were told so many times). I am convinced I have had symptons for at least 10 years but none of them individually were disabling to the point I was non-functional until the last year or so so I didnt insist. That said, doesnt mean I was functioning great or even had a great quality of life, just that I adjusted, and in my case, cut out almost all social activities to save strength for work/supporting myself.

I am most thankful my mind is mostly unaffacted (except when I am too weak to focus) because I thrive on thinking up solutions. I think the forum group should brainstorm - clearly this is a highly intelligent group of people.

Off the top of my head, maybe we could setup a thread that stays at top (like link, intros) that "lurkers" could respond to? people who may think they have something wrong. Of course, I realize it may take years before someone finds forum (I only heard Myasthenia Gravis for the first time 7/24/12 and I had been trying to figure it out although I thought it was from the guillain barre syndrome and I totally misread my symptoms because adjusting for my symptoms was so deeply ingrained in me that I no longer even realized I had many of the symptoms).

Anyway, just some things to consider not only for others but for ourselves, since we all will be living with it forever.

Stephanie

Mike

thank you for your willingness to share...i shall ponder your responses and I am sure I will have some more questions.

Stephanie

Did Your doctor have opinion why test was negative then positive later? From my limited understanding about this illness that doesn't seem logical unless test was wrong initially given symptoms were no worse.

Did you have EMG or SFEMG and if so, when in relation to diagnosis and tests, and was that test positive or negative?

Thanks again for your willingness to share.


Ps do u play ping pong and if so, it actually seems like that might be something I could do...always enjoyed it when I play usually on cruises.

My Neuro-opto said that happened sometimes.
I had EMG as one of the first tests about the same time my first bloodwork (neg) was sent in. I didn't get the single fiber because it was 3 hours away. Since then I have learned you can get a neg single fiber and still have MG. That test is very sensitive and difficult for Dr to read.

I played ping-pong the first year but now my condition has gotten so bad I can only play a couple of games and have to go slow because my balance is horrible. I have fallen twice playing and about 5 more times around the house.
Mike

Unfortunately, it is the exact opposite.

neurologists are ready to accept a mild form of MG with negative tests, but not severe and "seemingly" potentially life threatening symptoms.

I know that from my own experience, I have read about it in Chloe Atkin's book and I am sure there are other patients who are not in the position to do much about it. I believe some of them die from " unexplained causes" or from a " psychiatric disease" without anyone ever knowing that they had MG.

This description is taken from the supplementary material of a recent paper.
It is a description of one of the patient's who's anti-MuSK antibodies was used for the study.
She was "fortunate" to have a diagnostic EMG at that point, found to have anti-MuSK antibodies and responded to high-dose steroid treatment. (at least according to this paper which expresses her physician's opinion and not her "subjective" feeling).

In my field of practice such a delay in the diagnosis of a potentially treatable disease would be considered malpractice. In neurology this management of atypical variants of MG is considered the standard of care.

Possibly a small percentage of those patients do have a psychiatric problem, but I am sure that the vast majority of them don't. I think many of them may have a normal emotional response to their illness and may be depressed and anxious due to the loss of their functional ability and the uncertainty of having to live with such symptoms with no help from the medical profession. (and many times the opposite, they are met with disbelief and have numerous humiliating experiences. Their family and friends are encouraged not to trust them as well).

This woman's life and career was destroyed (and we can't know from this short medical description what other devastating effects it had on her life) when she had an illness that could potentially respond to treatment. She could have easily died at home during one of her " anxiety attacks".

Still the DSM-5 has an old-new entity called " functional neurological disorder" which is a psychiatric diagnosis based on the ignorance of neurology as a field. The treatment for this " disorder" is positive thinking and reassurance and possibly antidepressants, anxiolytics etc. I am sure that many undiagnosed MG patients fall under this category. I am sure very few of them " respond" to this very effective management approach.

Neurologists are very forgiving to themselves and their colleagues for missing a serious disease because the patient "presented" with what " appeared" to be a psychiatric illness.

I am not. I think there is no reasonable excuse for missing the diagnosis of potentially treatable illness for 10 years. The patient described above obviously had MG symptoms and was seen by a neurologist (as she was tested for AchR antibodies and possibly had other tests as well).

If they don't have good tests to diagnose this illness, they should work on finding them or at least not dismiss patients who have myasthenic symptoms and normal test results (using tests which have only been verified in patients with classical AchR MG).

This is written in the official MGFA site-clinical overview of MG for health professional.


And yet, most neurologists (including MG experts) have no problem with that. They also have no problem with dismissing patients with clinically apparent MG symptoms and normal test results who have no other reasonable explanation for their symptoms (other than this " waste-basket" psychiatric diagnosis).

It is not the mildest cases in which the diagnosis is delayed for years, but the most severe ones.
Instead of doing everything possible to improve their diagnostic abilities and to find better management approaches for this illness, they are busy convincing themselves (and their patients) that this is the "most well understood disease" and that patients with this illness lead a normal life with very few side-effects of treatment. They are also convincing themselves that patients with a significant delay in diagnosis or those with normal test results could at the most have a very mild illness.
And those that don't have an easy to diagnose and manage illness, have serious side-effect or don't respond to this excellent treatment?-they obviously suffer from psychiatric problems. Such psychiatric problems are an obstacle in diagnosing the illness, assessing its severity, assessing the response to treatment and even an obstacle in the response to treatment, as such patients do not " realize" that they are in fact in remission and keep on insisting that they still suffer from myasthenic symptoms.

Does this sound ridiculous? Does this sound like something I have made up? I am sure it does, but unfortunately it's not.

I am a lurker, I used to be involved a lot on this forum but since I cant get anyone to agree on whether I have MG along with everything else I tend to stay quiet.

I have had numerous tests for MG all negative (Musk, achr, EMG, SFEMG). The only test I am positive for MG is the ice pack test. Place an ice pack on the eye affected by ptosis and magically the ptosis disappears. No one can explain to me why this test works if I don't have MG, as this test proves that something is wrong at the neuro muscular junction. As agreed by Angela Vincent who does a lot of research in the UK.

What I wanted to add is I am on an American forum for Postural Orthostatic Tachycardia syndrome called DINET. It is amazing how many members on this forum have been tested for MG and have positive ACHR tests and are told by their neurologists that they don't have it.

Research has shown that ACHR has a role in dysautonomia ( wacky autonomic nervous system) and many patients are treated with mestinon with varying success. Mestinon is used off label as it increases blood pressure on standing.

Many people (myself included) on the forum also suffer with ptosis both unilateral and bilateral along with double vision.

Some patients with MG go on to develop dysautonomia - symptoms which include low blood pressure, syncope (fainting), pre syncope, breathing problems, temperature control problems (most of us have an increase in our symptoms if we over heat - like MG).

So like Alice I believe science and medicine have only just started to understand MG / ACHR etc and I would suggest seronegative just means they haven't found the antibody that causes your symptoms, like Alice I believe MG is not one disease, I think there are many different sub sets also. I hope I haven't interpreted you incorrectly or put words in your mouth Alice!

Rach

"Lord, grant me the serenity to accept The things I cannot change,The courage to change The things I can, And the wisdom to hideThe bodies of Doctors I shot When they said,"You're perfectly healthy, It's All In Your Head."

Rach, you just made my day!!!

I have been diagnosed by various doctors, none of which were psychiatrists, with:

1. Depression
2. Anxiety
3. Bipolar disorder
4. Dissociative disorder
5. Conversion disorder

And all of this caused my eyelids to droop, not to mention all the other MG symptoms. And not one of these doctors referred me to a psychiatrist. My new neurologist thinks that I never had any of these, and any psychiatric symptoms were caused by the drugs that I took for the problems I didn't have.