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Hi my name Ann. I was officially diagnosed in Sept of last year. I have
had symptoms for the past several years that got worse as the years went on.
I was exercising and swimming three times a week and then I started getting
more muscle cramps. I went to the doctor and he just told me to take calcium
and magnesium and drink more water. It took him a long time to understand
that the muscle cramp were extremely painful happening several time a day.
I would have abdominal muscle cramps that felt like i was in full-blown
labor. They would come on suddenly when I was startled or when I coughed.
They would ease up for a few seconds and then just get worse again. Several
times my feet and hands would cramp up until they were fully distorted. I
did go to a neurologist who seemed to have an idea of what I had but made no
effort to diagnosis what I had. He told me that it would not do any good to
try to diagnosis my disease and instead gave me all kinds of different pills
and most of them did not work well and also caused several side effects.
Often when I went to see him I did not feel like he even remembered me. I did
finally request a new doctor, which has been a Godsend to me and now is
treating me with IVIG, which is working well. My symptoms still get worse at
times but they are manageable. I am eager to talk to people that have the
same syndrome. Most people do not understand the pain and all the other
symptoms. I found your web site today and am eager to learn more.