View Single Post
Old 07-31-2016, 05:03 PM  
Caprice
Junior Member
 
Join Date: Jul 2016
Posts: 9
Default Camptocormia?

Quote:
Originally Posted by Stellatum View Post
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
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.
Caprice is offline   Reply With Quote