Hello and thank you to whomever takes the time to read this :) ...
My sister and I are suffering from obviously the same disease but we cannot get a real answer.
It all began very quietly...we were both active and energetic children....into our teens we had a lot of aches and pains but figured that was normal. We remained active but as years went by we became more tired...less active, more aches and pains. Eventually we each realised that we never felt good...we always had some comlaint of pain or discomfort. Both of us feel sick or have bowel and digestive issues all the time and cronic headaches.
I shall try to make this as short as possible, we were each diagnosed by diffrent docs with Fibromyalgia which we had never heard of. We accepted that at first though we learned it was not supposed to run in families....just a fluke. Then my sister began to have seizures....I was concerned yes but did not expect it to happen to me because Fibro doesn't cause seizures it must be another fluke.....but it did happen to me too.
Now here we are, slowly worsening as time goes by and a parade of doctors have given us no answers. I being the younger and more rebellious of us have had an even harder time getting the doctors to listen but neither of us has found one yet who takes a real interest in our situation.
I thought maybe neurofibromytosis, our uncle has benign brain tumors but my MRI came back normal. I continue to search and search but I am getting so discouraged. Does anyone have any ideas? Does anyone here have the same symptoms and know what it is? Any advice would be wonderful. This is ******n my whole family and I think my daughter may very well be next. I pray I am wrong but she has the learning problems we had and she complains of pain and being tired all the time. I'll stop I know I am droning on....:o
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