mystery disease

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Symptoms: for last couple of years, I've had neuropathy in soles of my feet, palms of my hands and top my head. I've also developed lichen planus in my mouth. In addition, I've not been sleeping well and am fatigued. Recently, I've head breakouts on my faceThere's also a constant dull pain near my stomach and right side of the abdomen. My neuropathy is best in the morning and keeps going up or down for rest of the day.

Tests: blood tests show normal results- thyroid within range, Hepatitis panels were negative, H. Pylori was negative, all other markers are within range, autoimmune tests were clear. CT scan and ultrasound were clear as well.

Are there any hypotheses as to what might be going on?

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4 Replies

  • Posted

    no but i have a pain as well in my abdomen as well as neuropathy in my feet, have had a mri and am supposed to have an ultrasound to see about anything else. My blood tests were normal except my co2 level and my sodium was a little high but not enough to worry about. I did have a false positive blood test for hep c and redid that and it turned out negative. Good luck on your search...
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  • Posted

    Hi

    Firstly, can I send you my best wishes. 

    Being in the dark is never easy, I know but there is always hope that you will find help and support through difficult times. This site is particularly heart warming as I have often blogged and received lots of positive vibes.

    I am replying to yours because I too have mystery in my life which does nothing for my confidence.

    I, too, have had a chronic pain in my left groin for many, many years and no one has ever said to me, "This....." so I battle on never knowing what each day will bring. I don't moan, I don't really talk about it, I just accept the pain  !! I have occasional numbness in my feet.

    my neurologist wrote that I may have the start of MS, my gastrologist said it looks like ACNES, my gaenacologist thought it may be cysts on my ovaries and the specialist I am seeing at the moment thought it was Diverticulitis but has recently told me it may neuropathic pain; that is, the nerves are not receiving or sending messages to or from my small bowel.

    I have tried a twelve months GF diet and slowly got myself back onto a 'normal' diet last year.

    6 weeks ago, I started taking Amitriptyline (10mg) but the pain still there. This week my doctor has moved me onto 10mg of Noctriptyline (I think that is the spelling). Anyway, the same family of tablets to see if the side effects are less.

    I have lost faith in the medics as you can imagine so I just keep on asking questions and looking for anything that I think may take me on a new journey to find answers.

    it's not easy, is it ? but I try to be philosophical about it otherwise one's mental health takes a beating.

    Great that have access to your blood results and keep asking questions.

    I won't say look for relaxation and stress busting classes because I have done all that and it' s like a drink or a cigarette; you get the highs and then the lows loom ahead. It's worth trying but don't expect too much because it takes determination to keep it going and hard work when all you feel is this constant pain. 

    I may not be any help to you but I hope I can reassure you there are a few of us out there plodding along. Sometimes we forget to look for the positives because we are so embroiled. Put on a Micky Flannigan DVD....he will bring some laughs your way !

    All the very best to you,

    Jane smile

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  • Posted

    Hello,

    Not a doctor and sounds like you have a host of conditions that may or may not be related to each other.

    I can only comment regarding the neuropathy issues in the feet and hands.  Please read my post regarding this condition and milk thistle, which  has cured my neuropathy pain in feet for over a year now.  It has stopped my mother's tingling in her feet (simply due to age, she is 78), my pain management doctor is giving it to her husband, which it is woring and she is now recommending it to her patients.  Also has helped a type 2 diabetic with neuropathy pain who was in the hospital.  You can also see, listed at the Mayo Clinic site, regarding milk thistle and it is listed for diabetic neuropathy (kidneys).

    Hope this can help with the neuropathy pain.  I would highly recommend finding a good doctor to discuss all your condtions.

    Best Wishes!

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