Severe symptoms, no answers

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Hello,

I dont know what forum to choose since she has no formal diagnosis.  I am posting on behalf of my mother who has been sick for over 4 years and no doctor has been able to properly diagnose her.  Her symptoms are uncontrolled and she seems to be getting worse and worse.  She is 65 yrs old and here are a list of current symptoms:

Severe hot flashes

Shakes

Profuse sweating & chills

Headaches

Burning pain across whole body and at times lasting for hours, pain is excruciating

Low energy after activity, she becomes weak and short of breath, can only walk short distances

Stomach aches and nausea

She has had the following tests done:

Cat scan of abdomen - negative

Nuclear medicine xrays - negative

Multiple blood work - came back abnormal with excessive adrenalin in blood

The only thing that seems to help a little bit is eating at least every 2 hours or less.  She will eat until she starts feeling better and the more she eats, the better she feels but only for a short period of time.  She tends to feel the best late afternoon, into the evening.

She has an excellent doctor who is trying to help but unfortunately he has run out of ideas on how to treat her.  She has tried many different medications including ketamine treatments.  Some of the meds have worked for a while but then they eventually stop working.

Each day her symptoms are different.

PLEASE if anyone can help, we are in desperate need of direction/help.

Thank you

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7 Replies

  • Posted

    Hello I wish your mother the best and hope she finds what is making her feel this way. I would advise buying a blood sugar test kit and testing for hypoglycaemia or hyperglycaemia or diabetes. It would give shaking and low energy feelings and would tie in with the eating theory. Test before meal and 1 hour and 2 hours after. It doesn't always show on a fasting test at the gp if mild. Good luck .
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    • Posted

      Thank you!! She was diagnosed as hypoglycemic a while back and we think something is wrong above and the hypoglycemia. Thanks for your response!
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  • Posted

    Some of her symptoms sound as though she has symptoms of an adrenal problem and could possibly have something like pheochromocytoma, a non-malignant adrenal tumour. 

    I would mention this to her doctor as a possibility and ask him if he thinks it is possible, given what your mother's symptoms are.  If he does not have knowledge in this area, he can refer her to someone who does.  The choice of diagnostic test should be based on the clinical suspicion of a pheochromocytoma. Plasma metanephrine testing has the highest sensitivity (96%) for detecting a pheochromocytoma, but it has a lower specificity (85%).[28] In comparison, a 24-hour urinary collection for catecholamines and metanephrines has a sensitivity of 87.5% and a specificity of 99.7%.[29]

     

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  • Posted

    She's obviously been tested for thyroid issues. I think you are in the hands of the doctors.
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  • Posted

    Hi, I really feel for your mom! There is nothing more terrifying when you are sick like this like that and are getting no answers from the docs. Not sure if I will be much help to you at all but most of the symptoms you have described are what I have experienced this year. My doctors did tests for a virus, hyperthyroidism, hypoglycemia, neuroendocrine tumor and the pheochromocytoma that Linda has mentioned as all of these can have those sort of symptoms, so I would definitely ask for those tests. 

    Just another suggestion if you still can't find what's wrong after these tests is to visit a homeopath or naturopath as they can have some very helpful meds which can help to alleviate symptoms and rebuild the body. I did this in the end because the informal diagnosis for me (when these blood tests showed nothing) was that I had a cocsackie B virus that had caused an inflammation in the thryroid causing a temporary hyperthyroid state. It was also felt that this (among other things) had put undue stress on my adrenal glands and that I was suffering from adrenal disfunction. The regular doctors were not able to help me at all with meds other than with a beta blocker to help minimise palpitations and shakes. I eventually went to a Homeopath in desperation (who gave me my life back!) after giving me some herbal meds that have made a huge improvement in my health and definitely set me on track to getting better. 

    Really hoping that your mom finds answers and help soon!!

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