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tiymay (@tiymay)

Dealing with symptoms from unknown cause

Just Want to Talk | Last Active: May 9, 2019 | Replies (12)

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Hi @vmarie and welcome to Connect. You may have noticed I moved your post to this existing discussion so that your post would be seen by more people. Simply click VIEW & REPLY in your email notification to get to your post.

That must be so frustrating and hard to watch your daughter suffer so much. I wanted to introduce you to @sierrawoods @libjen @contentandwell @gailb @jigglejaws94 @lmherman and @mittzyvon as they have experience with mystery diagnoses and may be able to offer you support.

Back to you @vmarie, have doctors tried any treatments as this time? Has she had blood tests to see if there is a chemical imbalance somewhere that could be causing some of the symptoms?

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Replies to "Hi @vmarie and welcome to Connect. You may have noticed I moved your post to this..."

@vmarie I am sorry to hear your daughter is going through such difficult symptoms. As @ethanmcconkey indicated, I went almost a year and a half without a diagnosis for symptoms which I discovered later should have made a diagnosis obvious. My problems were nothing like your daughter's, but I know the frustration of not knowing what is causing problems.

What I learned from this for myself, is that I will never, ever go a long time again without a diagnosis. I live in southern NH, about 55 miles north of Boston. If ever again I am not diagnosed in a reasonable amount of time I will head to Boston to a major medical center that is a teaching hospital. For me, the choice is Mass General Hospital. I go there now for virtually everything except for my PCP. If a diagnosis continues to elude your daughter's doctors, you may need to go elsewhere also.

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