Shawna;
Your earlier post -
Quote:
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I myself am diabled with Myofascial pain, Fibromyagia, Partial complex seizures, Anemia, Allergies, Bones that break from walking, osteoarthritis, polyinflammitory arthritis
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, - and the fact that you cannot get familial history on your Mother's side is difficult. Some of what you are describing for yourself is definitely neurological, and part is auto-immune in origin. Is there any information regarding Hemophelia (almost always in males) in the family. If, perhaps, he does have an internal bleed - maybe even a microsopic one that drains his energy and red cells - thereby giving him less energy - might be considered. I know he is very young, but possibly an upper and lower GI done by a GOOD pediatric surgeon - and an EUS (Camera scope of the bowel that can't be reached by the regular scopes) might at least verify that there is no bleed anywhere.
Do you know what his oxygen saturation is? If not - go to Walgreens and buy a Pulse oximeter - can be used on all of the family - but will check how much oxygen is in his blood. Anywhere below 92 - usually supplemental oxygen is needed.
But the best advice I can give you is to keep a journal, and ask the Dr.'s - all of them - for copies of his medical records, lab work, test results, etc. and keep them in order so that you will have all the answers when any other Dr. asks you.
I wish you much luck, and congrats on the weight gain!
Beth
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Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS
. and I can't help the one I love the most.