I know this is an older post, but I wanted to respond to it because I've been through so many misdiagnoses, doctors who kept telling me my issues were minor, and doctor who didn't even believe I was sick that I think my experience has been a little different than the average MG patient and I don't know if it might help anyone in a similar situation.

While my condition has gotten gradually worse, I can't remember a time when I was pain free. Initially, I attributed the pain to sports, then when I couldn't play and things kept getting worse, I started realizing that something was wrong. My senior year of high school are when things really started to get bad, and then in college they got worse. But I think this is when the Myasthenia began as I started having eye trouble at this point.

Anyway, to make a long story short (I could write a novel), about three years ago I was DX'd with impinged hips, but that didn't explain all the neuro type symptoms going on (this was after about five years of being told my trouble walking and my back pain was a minor arthritic problem, and not being believed when I told them it was something different). At this point I stopped going to my current neuro, as he labeled me "under control" as far as he was concerned.

About this point, I finally realized that the doctors either had no clue what was wrong with me or really didn't think anything was that wrong. I also realized that whatever I had would probably kill me before I was 35, based on how fast my health was going downhill. This bothered me for several weeks, until I realized that death was better than how I'd been living and that I wasn't magically going to get better as my symptoms were getting worse.

Somehow, coming to terms with this actually helped me emotionally. I, honestly, haven't really been upset about my illness since then until I found out my cousin may be going through the same thing.

At about the same point, my father and my orthopedic realized that my problems were probably more neuro than ortho and encouraged me to see a neurologist (well, my dad encouraged me, but there's only so much he could do...my orthopedic said he wouldn't fix my hips without the okay from a neuro).

I decided I wasn't going back to the guy who kept telling me I'm fine (even though he's known as the best in the city), and he wouldn't let me switch to his younger partner who was a neuromuscular expert, so I called a new practice took first available. He recognized the MG right away, but cleared me for surgery and told me to come back later (which was really dumb). I stopped breathing during the surgery, then he wouldn't treat the MG until I had more surgery. I switched neuros at that point.

Things at this point at least stabilized, but the pain never got better, nor did my walking despite the hip surgery. In the last month, I've discovered this is from Stiff Man Syndrome and I've actually been much better than before. I'm still in pain, but not as much as before and I can walk again.

I've actually gone on a bit of a buying spree the past couple of weeks as I didn't really tend to think past my immediate needs, plus I had to give up photography as a hobby as I wasn't able to walk. Besides a new gaming computer, and a good pair of headphones (which actually hurt to use until recently), I haven't really spent any money and wasn't able to travel. I did waste money on half a dozen ergonomic chairs and mattress pads that never helped.

Anyway, getting the MG and the SMS under control has actually made me realize that I can, hopefully, live a somewhat normal life. I understand that most people here are devastated by their loss of functioning as it typically happens over a quick period and I try to be sensitive to that. However, I feel like I've had a bit of the opposite effect. Three years ago, I thought I was dying, and whats worse is that I was okay with it. If I hadn't been diagnosed with MG and now SMS, I'm not sure where I would be, or what condition I would currently be in.

I guess my point is this...don't give up. If you think something is wrong, it probably is and there is probably an answer somewhere. In my case, the same news that I realize everyone else is having trouble dealing with has probably saved my life. In the state of mind I was in a few years ago, however, being told I had ALS and would be dead in three years would probably also have been welcomed news. Knowing whats wrong and being able to deal with it is better than giving up because everyone says you're perfectly fine when you know you aren't.

Erin,

I too am late in responding to your post. I also am dealing with both MG and Stiff Person Syndrom (SPS) but have only been fighting this battle for 3 years which after reading so many post from people who have dealt with the symptoms of MG for years with no diagnosis is a blessing (I guess).

I am very angry that these illnesses have taken my life from me. I've lost the ability to work, lost a job that I had for 13+ years and I have no chance of recovery. I have always been very independent, going where and when I wanted. My husband of 32 years didn't have to worry about me, take time away from his job to care for me and add stress to both our lives.

I would hope if I only had MG and had the prospect of a recovery or remission, I would have so much hope that I would get my life back or at least most of it. However, being diagnosed with SPS there is nothing in my future but drugs to help me make it through the day (day after day after day). And those drugs have a greater potential of causing other problems and have already done so. I take prednisone which has contributed to my newest diagnosis of osteoprososis.

Anyway, I've had to learn to take it day to day and be thankful that I can get around if only at my house. My big outing is the grocery store once a week. I can do some housework (which I HATE) instead of playing in the dirt outside in our yard (which I LOVED). My life has totally changed in a blink of an eye and is now out of my control. But like you said, I have a wonderful husband that has battled with me, a wonderful friend that has also been with me every step of the way and a family that understand (as best as they can) about what my life is now.

Just be thankful for the small things you have. I hope you get your life back as soon as possible.

Becky
Southern Bell

I wanted to add to what you said about looking just fine. When I was sitting at my desk, I'd be weak and in pain, but people would say, "oh you look so good today." I wouldn't know how to respond. Do I tell them how I really feel or do I just say "Thanks" and let them think I'm doing better?

Also..at least in my experience, its not only harder to deal with the diagnosis when you are young, but its harder to actually get the diagnosis. The doctor looks at you and thinks you're young and just fine. They had me seeing psychiatrists because they didn't think I was really in as much pain as I claimed.

They had you see psychiatrists because your illness didn't fit any box that they knew. It had nothing to do with your age, gender, level of education or even your behavior. It had nothing to do with you. It was their way of dealing with their own frustration.

Had they actually made a diagnosis that fit the symptoms, I would agree. Instead, I was first told I needed a psych eval before I could go back to the University practice. I have a feeling that something was written in my chart at that point because it was a long time before my pain was taken seriously. When that didn't pan out because I didn't want group therapy for loneliness (as they thought that was the source of my "pain"), they then they sent me to a neuro-psychiatrist who completely missed the neuro symptoms and told me I was depressed--of course I was, but there was a reason for it. When my eyes got so bad I could no longer read, they did send me to a neuro-ophthalmology, but he completely missed the MG, told me it was just muscle spasms and gave me dilating drops. The learning needs center told me that as I wasn't technically blind, I had to wait until everyone who was blind go their books on tape before I could receive mine, which meant that the semester would be 1/2 - 3/4 over before I'd get my text books and I had to drop out of classes.

When my pain doctor first saw me, he told me he didn't know what I had, and that he could only treat the symptoms, but he was appalled by the treatment I'd received and I needed to give up on community doctors and be seen by a university center.

Sorry, I'm not trying to be disrespectful, but I've spent about 15 years trying to prove to doctors that whatever is going on is neither in my head, or a minor case of arthritis. Unfortunately, I no longer see the doctors to whom I needed to prove this, except that I credit this stubbornness with keeping me alive this long while I've had undiagnosed stiff person syndrome.

I'll get off my soap box now.

That was exactly the point I was trying to make. You have two rare diseases, so quite likely they have never seen someone like you. Your illness did not fit their knowledge and experience, so therefore it did not exist.
Psychiatric problems, on the other hand, can be as bizarre as you like. There are no criteria to make this diagnosis other than that you have troubling symptoms (which obviously you do if you are seeking medical help) and the ignorance of the physician you consult.

http://www.dsm5.org/proposedrevision...ion.aspx?rid=8

My personal opinion is that you are very fortunate that you no longer have to see them.

I actually realized two things overnight. One is the point you were trying to make, which you did clarify for me. Thanks

The other is that in a way they did send me to many of the right doctors--they didn't send me to a normal psychiatrist, they sent me to one that was board certified in neurology. They also sent me to a neuro-opthamologist. And on my own I found a neurologist near DC. All these doctors just missed the actual problem. The neurologist probably got the closest by realizing it wasn't in my head, but said it was arthritis and I should be seeing a rheumatologist. At that point he pretty much followed me as a formality.

I actually saw two rheumatologist. One said I was lucky and it was muscular--but didn't tell me where to go from there. I guess she was right except for the lucky part. The other, unfortunately, said it was ankylosing spondylitis--which then took 5 years to prove that there were no changes in my spine.

Also, as I think back, one of the things that may have led them to believe it was in my head was that when I first sought medical attention, I hadn't slept for six or seven nights due to the pain. In addition to sending me to a psychologist, they started me on a steady stream of codeine. At the time I thought it was because I was in a lot of pain...I found out later that the medical center just handed out T3 like candy because it takes care of most ailments that people in college complain of (colds, sprained ankles, etc).

I think that once you have a "waste basket" diagnosis you can throw everything into, it is very convenient, as you no longer have to think about this patient.

This can be extremely dangerous and harmful (and in fact it is).

I am not saying that there are no true psychiatric problems (even though I do think there is significant over-diagnosis, because there is a very large spectrum of normal, so how do you define abnormal?), but that there is no place for a diagnosis which is merely based on lack of knowledge and ignorance (of the specific physician, the entire field or even the entire profession).

I think physicians should avoid using this diagnosis (despite its convenience) and patients should be aware of its existence. (so that they know:1. It doesn't mean that there is something emotionally wrong with them, 2. It may be the lack of knowledge/experience of a specific physician, specific field and others may have the answer).

This diagnosis is "survival of the fittest". Only those who are assertive enough, have the determination, knowledge, ability and support required can survive it. I don't think it has a place in modern medicine.

I am sorry that you had to go through this. I am glad that you eventually found those physicians who treat you properly.

Would it not be difficult for ptosis to be caused by psychiatric issues? Neurological abnormalities that can be documented may be made worse by stress, but there has to be more than just a case of the crazies.

While it is very frustrating to finally "get" a diagnosis of MG, we must remember that only 600 new cases are diagnosed in the US each year - in a country of over 300 million, it's not hard to understand why even the best doctors sometimes miss it.

It's a subtle and slow-acting disease in most cases - by the time we realize there IS a problem, we've probably had the disease for over 10 years; it can take many more years for a doctor to check off all of the boxes of what it ISN'T before they (possibly) think "MG".

Doctors are human, just like the rest of us, and they will usually only see any given patient for 30 minutes to 1 hour each year - it's hard to know what's really going on in a person's life when you aren't living in their body day in and day out.

Thankfully, we have forums like this where we can talk with other people who are going through the same things that we are and who understand what we are talking about!