My story: I have Graves' disease, which has been in and out of remission for ten years. I take PTU when it flairs up. In the fall of 2009, my five youngest kids got H1N1. I took care of them for two weeks, but never got it myself. Towards the end of the two weeks, I inexplicably collapsed--I just became too weak to hold myself up, and ended up on the floor.

After that, I started losing my balance a few times a day while walking. I also noticed occasional weakness in my arms and legs. My neck became so weak that holding up my head was at times difficult.

By about January, I was having trouble walking at times. My main symptom is a weakness in the muscles of my side and back, which makes it hard to hold myself upright from the waist up. During a bad spell, usually late in the evening, I also have weak legs.

I am not diagnosed. My MRIs are normal. My blood tests are all normal--no antibodies that they can find. My SFEMG came back slightly abnormal, but not enough to diagnose me with MG. That's because the doctor only tested muscles in my legs, which are only slightly affected. He says he can't test the weak muscles in my sides and back because he doesn't have numbers for what's normal for those.

I am on Mestinon, 60mg every three hours while awake. Sometimes I think it helps, sometimes I don't. The last time I saw my neuro, I was in the middle of a very good spell, almost a remission, that lasted a month. Since I have no diagnosis, and I was doing OK, he didn't want to start me on immunosuppressants. Now that I am getting worse--having trouble walking at all for large parts of the day--I hope he will be willing to try something more than the Mestinon.

I would love to hear from anyone who has my atypical symptom: weakness in the sides and lower back that makes them tilt back and forth from the waist up when they try to walk.

Abby

I'm updating my last post to this sticky "your diagnosis" thread. I see I'm the only one here, but I think this is a good thing to do. I have found it helpful to read other people's stories, and get a sense of the variety of ways MG can affect you.

I am now diagnosed. I had three antibodies blood tests, all negative, and three SFEMGs. The first was "borderline" and the second was mildly abnormal. But what gave me the diagnosis was the third one, which was a stimulated SFEMG on my face (even though I have only very mild facial symptoms). This was done by a specialist in Boston. I am going to start Imuran soon.

Abby

Best wishes and prayers go out to you.

I was diagnosed using the Tensilon Test in the hospital during an exasperation in Jan. of this year by a neuro specialist. Since then, like you, my other tests are "normal".
Because of that I can't even find a neuro to treat me.
I have the trunk issues like you. It also affects my ability to hold my head up for any extended period. It also affects my respitory muscles to the point I have been intubated.
I am glad that you are being treated with Mestinon. I am on that as well as CellCept. The hosp. neuro put me on them and my PCP refills them for me.

Hi, Abby! I have seronegative MG as well; no antibodies. At one time, there were 2 (out of 3 they tested for at the time); I've never been tested for musk. I get that trunk weakness and have to be careful if I lean forward to adjust the miniblinds in the window, I get this back and forth tremor like my body can't balance itself and my head wobbles and feels like its going to tip me into the window. Like you, if it's down in my legs, it's a really bad spell. Mestinon did not agree with me, made me incredibly jittery and sort of jerky feeling. Prednisone is what I rely on to pull me out of bad slump, I don't take it constantly, just if I am crashing. I have had short and long remissions, usually several months every year, and it seems to cycle on its own up and down. There are always down cycles that I iknow the cause of -- a virus, overdoing, big time emotional upset, etc. But it does definitely cycle on its own and is, to me, one of the most challenging aspects of the disease. Do I suit up for my good days, or for my bad days? I recently had such a bad low that I had trouble getting oxygenated for the first time ever, quite scary. I had to make some significant changes in my life to make my life manageable when I am in a down, including letting my dogs go to other homes and sending my son to live with his dad, don't know if its permanent or not. Very hard, but you have to rest aggressively and do all you can to stop the downward spiral so you can enjoy the respites!

Two years ago I was diagnosed with camptocormia. I bend forwards or sideways when I walk. There is not enough strength in my lower back muscles to hold up my spine. Walking is very difficult without two sticks. In fact I now use a mobility scooter. An MRI showed wasting of the para spinal muscles, but not everyone has this show up on the MRI. I think I have myasthenia as well now, though the tests are negative. Look up this rare disease, which goes hand in hand with autoimmune diseases. I hope you find an answer soon for your health problem.