Undiagnosed for nearly 4 years, need some quality of life back!

Posted by sandy1234 @sandy1234, Aug 12, 2022

Hi there,
I was a fit and healthy 19 year old, when I was struck with immense nausea and upper abdominal pain, bloating and extreme fatigue to the point where I'm bed bound, and weak legs, which I can only describe as feeling as though they've been filled with concrete.

As the years have progressed, I now have heat intolerance, lesions on my scalp, my heart rate goes up over 40 beats per minute when I go from seated to standing, and yellow bruises that seem to appear on my legs for no apparent reason, and I often wake in the night with a knawing pain in my stomach like I've never eaten before.

I have seen a gastroenterologists who have ruled out crohns disease, IBS, gastroparesis, inflammation in the gut and food intolerances and have discharged me, saying there's nothing more they can do for me.

I'm at my wit's end, and have spent almost four years bed bound. No anti nausea medication helps at all, and the only medication I'm on is sleeping tablets to sleep through the pain at night, although it still wakes me during the night.
I have attached pics of the scalp lesions.
If anyone has any clue as to what this could be I would really appreciate some help as I'll be turning 23 this year, fell ill when I was 19 and just want some kind of quality of life back. Thank you so much, in advance!

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Did you have a dermatologist look at scalp? Form of eczema?

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@rose999

Did you have a dermatologist look at scalp? Form of eczema?

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No, I would never have thought that could be an issue with her stomach. Could it?

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You will get prescription shampoo and a med for other places on body. Is it flaky or itchy? It could also be psoriasis. They are sometimes together. It is relieved but never cured.

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@rose999

You will get prescription shampoo and a med for other places on body. Is it flaky or itchy? It could also be psoriasis. They are sometimes together. It is relieved but never cured.

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She does not show any signs of psoriasis.

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@rose999

Did you have a dermatologist look at scalp? Form of eczema?

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Have tried using tgel and trimovate in the past, but it doesn't do anything. It's not flaky or itchy, it's more smooth.

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@ddubya

My wife has Alzheimer's and has suffered with stomach issues such as discomfort, pain and nausea for over two years. She has had an upper GI, colonoscopy,MRI, CT and blood tests. All have come back negative. She has seen two Gastroenterologist over the years and just lately she was told that he was out of ideas.
Her stomach issues are compounded by her Alzheimer's disease and I am at a loss as to where to go for help.

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So sorry to hear that your wife is suffering. Not sure whereabouts you are, but private care seems to be the only option of any care. Could it be a side effect of any Alzheimer's medication she's taking?
It's so frustrating when you know there's something wrong and all the tests keep coming back okay. At least she has you fighting her corner, don't give up. I really hope you find some answers soon.

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Thank you for your concern. My wife does not take any medication for her Alzhiemer’s as there have been too many reports of side effects and their inability to make any long term changes.

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@mj953

Just a suggestion
I had similar issues and i went gluten free on the advice of acupuncturist
I was better wiyhin a week
I tested negative for celiac but i had a gluten sensitivity. That didnt shiw up on tests .

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MJ, Did you ever ger your internal tremors under control? Did they go away?

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