Undiagnosed Pain / Unsure What To Do Next.

Posted , 6 users are following.

This is my first post so I apologize if I'm in the wrong place. I've been dealing with my issues for four years and cannot get an answer or resolution. I've been to many specialists and to the ER countless times only to be sent home with "there's nothing wrong with you."

History: 37/m. 180 lbs. ITP - low platelets (7,000-10,000 range)

About 4 years ago I lost 60 lbs through diet and exercise. All was well. I was happy. I fell on my tailbone twice within a month. Haven't felt the same since. I was laid up on a couch for two months due to unexplained chest pain and it was difficult to breathe. ER visits yielded nothing and my doctor guessed it was costochondritis. He prescribed oxycodine and NSAIDs for the pain. NSAIDs caused Gastritis which put me on an IV for three days in the hospital. Had wisdom teeth removed around same time due to an infection.

I've seen every specialist I could think. An Endoscopy showed I had a "small sliding hiatal hernia" and the GI specialist said it wouldn't cause my symptoms. Functional doctor did more tests and I have a low Secratory IGA (immune response in stomach) and high bilirubin (3-4). Was on Restore and other GI suppliments, didn't help. Sometimes the pre/probiotics caused heartburn.

I've tried a glutten, dairy, sugar free diet only eating meat and vegetables for months. Helped a little and lost 10 lbs, but didn't solve my problems. Eating coconut oil and taking any form of anti-acid gives me terrible leg/feet cramps. I'm taking a multi-vitamin with magnesium and drinking coconut water for the potassium and it seems to help with the cramping.

Eating anything makes me feel worse for an hour or two afterwards. Not eating makes me feel really, really bloated making it difficult to breathe.

Has anyone experienced the following:

Neck tightness, choking/inflamed feeling.

Constant upper-mid abdominal pain, tenderness.

Shortness of breath after eating and doing anything strenous.

Overall weakness. Body/joints feels inflamed.

Frequent headaches, mostly after eating or waking up.

Sporadic phantom pinching on any part of the body. Lasts for a few seconds.

TMJ in both sides of jaw after wisdom teeth removal.

Waking calf/feet cramping.

I have 15+ pages of lab results on MYUPMC if specific lab results would help.

Thank you in advance,


2 likes, 6 replies

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6 Replies

  • Posted

    I also forgot to mention...

    Other symptoms:

    Face/skin redness, constant skin flaking. Used to have very smooth skin.

    Collarbone feels "tight", tender, inflamed.

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  • Posted

    Hi Vince. Sounds horrendous. You certainly seem to have a lot of inflammation going on. Could this be an immune response? Worth checking, although you seem to have had thorough tests. Hope you get some answers and treatment.

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  • Posted

    Since most of your problems seem to be food related it is suggested that you consult a certified dietition or nutritionist to can evaluate your condition and put you on a proper diet. Most will accept insurance if referred by a doctor.

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  • Posted

    Thank you both for responding!

    I did see a rheumetologist to test for things like lupus and that came out negative. The only auto-immune condition that I know of that I have is ITP, which is a blood clotting disorder.

    I have yet to see a nutritionist though. All of my allergy tests and IGG tests came back okay. No celiac disease, though I read that food allergies and food sensitivities are different. I tried cutting gluten, dairy, and sugar for a while but that didn't eliminate the problem (helped a little, but became very nutrient deficient).

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    • Posted

      Hello,I agree with the other comment that you should see a nutritionist...I saw o e and she was the one who really made my diagnosis or should I say put my doctors on the path of my diagnosis . I have some of the symptoms you exhibit, I was diagnosed with gastroparesis. I wish you the best.

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  • Posted

    I saw a Nutritionist...needless to say he was a quack. He started by making me hold a bottle of white-out against my chest and told me to resist his arm pressing against mine. Since white-out is bad for the body, I was supposedly weaker. He then put a magnet on the back of my neck to weaken my system while placing pill bottles/supplements on my back to see which ones my body responds to. He also checked for viruses and parasites in this way. I've never experienced such a crackpot in all my life.

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