Jenny
Forum Replies Created
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Fosamax has magnesium in it. I found that out after I took it for 1 month. It made me so weak that I didn’t get off the couch for the day. I am now on the Reclast infusion once a year and doing well. It doesn’t have any impact on my MG. Huge plus is it has reversed my osteopenia completely. Talk to your doctor about your side effects and see what they have to say.
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I know that they say that MG doesn’t run in families. However, at one time my family had as many as 23 members with MG. A good number of them only had the one disease. Quite a few of these have passed on now. I wish we could have had a study done on the family.
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There is a study from Thailand that states it is hereditary. At one point, there were 23 members of my family with MG. My family all believes it is hereditary. How else would there be so many?
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I was diagnosed in 1990 with the Tensilon test. I am glad that it was still available.
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It is very expensive and insurance companies do not want to cover it.
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I have been on Soliris for a little over 3 years. I get a little flu achy once in awhile. Otherwise, no side effects. The every two week schedule is a little prohibitive, but it works well enough that I am staying on it. I am seronegative and afraid to rock the boat trying to get on something else. I am afraid the insurance company will realize I am seronegative and stop allowing me to have Soliris.
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I keep hoping they announce an extended study for seronegative patients!