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Neuromuscular Diseases Message Board


Neuromuscular Diseases Board Index


Hi, Debora,

I am so sorry to hear about your mother's worsening condition.

I have MG, too, but a mild case (according to my neuro specialist, but not to me!). I was diagnosed in March of this year, as a result of a positive single-fiber EMG test. I suffer from chronic double vision, and do have tremendous arm and leg weakness upon exertion. My neuro, however, thinks that the muscle weakness is not attributable to the MG, but that's another story.....

From what I understand, it is not uncommon for MG patients to suffer from periods of remission, followed by a re-emergence of symptoms. Sometimes, a patient will suffer from a serious flare-up, known as myasthenic crisis. This particular state involves the muscles that control breathing.

Is it possible that your mother has not had MG since her teen years, but perhaps another autoimmune disease? (One of the problems with autoimmune diseases is that they share so many overlapping symptoms.)

Perhaps she has had MG only since the time of her breast surgery. Were the tubes to which you referred chest tubes, to help with breathing, or drainage tubes from the incisions? If they were chest tubes, then MG could explain her serious reaction to their removal.

Do you mind telling us what medications and/or treatments she has tried? After Mestinon and steroids, there are immunosuppressant drugs, such as Imuran and CellCept. The next step would possibly be IVIG infusions, or plasmapheresis. Sometimes a combination of one or more of the above options is necessary.

I think it is critical that your mother seek the opinion of a neuromuscular specialist, if she hasn't already done so. Most "regular" neurologists simply do not see enough MG patients to know much about the disease.

It is also possible that your mother is suffering from another condition on top of the MG. Back to what I wrote above, it could even be another autoimmune disorder. (I also have Hashimoto's thyroiditis, which can cause severe fatigue and weakness, as well as depression.)

I don't know where her GI problems could be stemming from, but it is possible that the stress she is experiencing over her worsening symptoms could be contributing to that condition. Perhaps a consult with a GI specialist is in order. She should probably also see her regular family doctor about her depression and to pursue other possible explanations for how she is feeling.

I don't have any dietary recommendations, but I can advise your mother not to take magnesium supplements. Magnesium exacerbates the muscle weakness of MG. Heat exposure can also worsen symptoms, as can stress and illness.

Please reassure your mother that many strides have been made in the treatment of MG even in just the last five years. In all likelihood, she will be able to live a long life!

I'd like to note, for what it's worth, that it seems as if many women at the age of menopause either develop autoimmune disorders for the first time, or suffer from exacerbations of pre-existing ones. Hormonal upheavals, such as occur during puberty or pregnancy also seem to be frequent "triggers".

My own problems escalated in just a two-year span after my relatively early menopause (age 46).

The main thing right now is to try to calm your mother down. The stress is only making everything worse. Once she's in the hands of knowledgeable doctors, she should be on her way to feeling much better. It won't happen overnight, but, God willing, it will happen!

Please keep in touch, and give your mother my best wishes. I will keep her in my thoughts.

Best,
Pat





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