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Old 05-09-2012, 10:10 AM #11
Stellatum Stellatum is offline
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Join Date: Feb 2010
Posts: 1,215
10 yr Member
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
10 yr Member
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Hi, and welcome. I'm so glad you're seeing a neuro who is testing you for MG. Please know that negative bloodwork doesn't rule out MG. Many of us here have never tested positive for antibodies. Also, if you test negative for the AChR antibodies (the most common), they should test you for LEMS and MuSK. Even if you test negative for all three, you might still have MG. There are other antibodies that cause it, and some people test negative at first and positive later.

Has anyone suggested POTS (Postural Orthostatic Tachycardia Syndrome) to you? I learned about that here, because some of the symptoms mimic MG. It would be worth googling. It causes a lot of the symptoms you mention.

I find it very hard to stand in line, too, and I think you're right: it's because it puts continual strain on the same muscles. I have a rollator (rolling walker with a seat) that I bring to department stores or anywhere that I'll have to stand on line. That way I can sit.

It's typical of MG to get worse when you have an infection. My guess is that an infection kicks your immune system into high gear, and then it produces more of the antibodies that are attacking the neuromuscular junctions, but I'm not sure if that's the real reason.

Many of us here have thyroid problems. Did you take PTU or methimazole (thyroid suppressants) before your thyroidectomy? There's a study that suggests that these drugs can cause MG. I think that's how I got it. If you're interested, I'll try to find the link.

Since your thyroid gland has been removed, I'm sure you're taking synthroid or some thyroid hormone replacement. Do you have your numbers checked regularly to make sure you're not taking too much?

Please feel free to ask questions here.

Abby

Quote:
Originally Posted by limpy View Post
I am currently working on a diagnosis for symptoms that have been going on for some time, but I have blamed them on other conditions or getting older.
I have had disturbances with muscles and nerves for about 12 or more years and problems with muscle fatigue. For the past three or so years I have had the problem that while I was in the middle of talking, I just gave out of breath, and if I continued to talk, I would be hoarse and my throat muscles would ache. I have also had a droopy eyelid that was more problematic when I was very tired. I have had a complete thyroidectomy due to a multinodular goiter. I have had ups and downs with my thyroid condition and blamed a lot of my weakness and the eye droop on that. I have had multiple cases of bronchitis over the years that always make me very weak and ill. Not until I started having the episodes of seemingly being too tired to breathe did I start putting things together and wondering if I had something like MG. And these episodes would come on for no reason. Did not have to be doing anything. In fact, standing in a stationary position, such as waiting in line at the store seemed to be more difficult than walking along. The only thing I can figure is that different muscles are taking their turn while you are walking, but you are using the same muscles continually to stand. Just my take on things.
I finally ended up going to the ER one evening with the breathing thing in late March of this year. I had never had it so severe that it scared me like this. What really scared me this time is that I was also having extreme heart palpitations, so much so that I was too weak and shaky to walk. I was seen by an electrocardiologist in the hospital and he confirmed that I had an arrhythmia. I don't know if this is something coincidental or is related to my other symptoms.
I was also seen by a pulmonologist, and tested and I do have some lung damage, but not severe enough to cause inability to breathe. I have more difficulty breathing out than breathing in. She referred me to a neuromuscular doctor who with physical exam alone suggested that I had MG. He did the EMG and the single nerve fiber test and told me I had nerve damage that was more of a weakness of the muscles. He ordered bloodwork, which has not come back yet. So in the meantime, I am trying to learn all I can about this disease. Any help or pointer would be greatly appreciated. Sounds like I lucked up on finding a good neurologist right off the bat.
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