Annie I can not thank you enough for your response! I think I said before that my mom and 2 of her sisters had MG. When I first started reading about my MG everything said it was not inherited, at the time I thought bull****
I will post more about my sister after I hear from her. She has a meeting with her doctor and I want to wait and see what the Dr says. Her Dr has already said that if she suspects MG she is sending my sister to Duke Univ we have a Dr's name there that has been referred to us by a family friend (neuro-surgeon) his name is Dr Sanders who is supposed to be on the cutting edge of this disease. I will get more details from my sister as things calm down. Again thanks for your input it really helps us newbies.
Mike
Oh I have had my Thymus evaluated and it was cleared. My sister is JUST starting so she has a long way to go. My first bloodwork to Mayo was 12 vials of blood OUCH
PS just got emails from my sister and it doesn't sound good
1. You know, I first went to the doctor because I was sitting at work and my arm and face felt "funny". When I first went to Dr. Lopez and mentioned the MG with mom and you, she said "Oh no. They must be misdiagnosed. This usually doesn't run in families." She didn't even consider testing me then. But on my third visit I told her about your test results. She looked stunned and had me go to the lab that morning. Maybe my results could be caused by something else??
2. (symptoms) The side of my face feels funny, like heavy. Also, my left eye some days is real droopy. But it doesn't last. Like when I look in the mirror to put on my make up my eye lid is laying over my eye lashes. Also, my arm is weak and some times feels tired. Sometimes I can't pick up the gallon of milk off of the top shelf in the fridge. I have started using my right arm. I think that my leg numbness is caused by my back problems.
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Originally Posted by AnnieB3
Mike, Wow, that must be unsettling. MG can run in families, though it's more rare. Often it's CMS that tends to run in families due to the fact that it is from a genetic mutation.
Do you know what the exact number was and the range that was given? Was it done at Mayo? Was she on any drugs before/during the test?
The chance of a false positive is small, especially when done at a lab like Mayo. 3 - 4 % of those with MG, at least that they know of so far, only have modulating antibodies. I'm one of those 3 - 4%. Although I can't say for certain since I've been on a steroid for my asthma ever since they started testing.
Perhaps your sister can take photos of her face first thing in the morning and then later in the day. Try to make it the same lighting, distance from camera and head angle (looking straight ahead). She could even do an upward gaze after the first photo to see if her eyelids droop afterwards.
Ptosis can be subtle. It's not always the eyelid almost all the way down the way it's depicted in books! To check for double vision, she or someone else could hold their pointer finger in front of her eyes and slowly move it back and forth in front of her vision. Or start with it about two feet away and move it towards her face. A person will not always have double vision in all areas of their visual field. Sometimes I only have it on the sides. It depends upon which muscles are weak at the time.
That statistic of 3 - 4% is directly from the "MG experts" like Dr. Harper of the Mayo Clinic and Dr. Howard of UNC.
The modulating antibody is not thought to reflect anything but MG. There have been speculations but no study that shows it is related to anything but MG, at least that I can find. I have searched everywhere! And if her clinical exam is positive for muscle weakness that gets worse upon exertion, that's pretty telling. Have they done any EMG's?
I hope she will get answers soon. Hang in there.
Annie
http://www.mayomedicallaboratories.c...nit_code=83370
http://books.google.com/books?id=Ys4...tibody&f=false
One more thing. You should both be fully evaluated for the possibility of a thymoma, if that hasn't been done already. |