Unexplained illness

Hello @jackic -- welcome to Connect. I’m sorry to hear you are having a difficult time getting a diagnosis. Connect is a good place to share your health concerns and learn what other Connect members with similar health concerns are doing for treatments. There is currently another discussion for undiagnosed autoimmune diseases that may be helpful to read through here:
— https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/bookmark/?ajax_hook=action&_wpnonce=8933e3d2d7.

Also, I would like to invite other Connect members who have posted about undiagnosed autoimmune diseases to see if they have any suggestions. @lisabeans, @cmtg, @pinkmk, @aman_23_23, @mommaj, @tljam, @whitechinacat, @palscoreen, @terryblink, @pinkstar, @rebo, @v1crew, @jewel8888, @tbeckys, @WendyAnne, @559purplepatty, @atorset, @beff2468, @taterjoy do you have any suggestions you can offer @jackic?

I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: http://mayocl.in/1mtmR63.
Mayo Clinic Tours – YouTube Videos: http://bit.ly/2o3jvMj

I thought this video maybe helpful to let you know you are not alone

What happens when you have a disease doctors can’t diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.

-- https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

John

His symptoms remind me of my own battles with migraine; also I worked with the mother of a boy about his age who suffered horrible migraines. I hope you soon learn the diagnosis and that he gets relief.life is so stressful for our young people—and their parents

I am so sorry for what you are going through. I would keep asking for tests to be run. Did they test for autoimmune markers? Did he get any cat scans or MRIs?

I'm sorry and know how frustrating having a "thing" is (exactly how I described it to doctors). I thought my bouts of fatigue and nausea and sometimes headache, had to sleep and bedrest for 2-4 days then was ok. Docs could not find anything- said depression. I began to think it was all in my head until I started taking my temp when episodes occurred, and found out I would also have a low grade fever. I knew something physical was happening but didn't know what, it was years later 2008 I was tested for HepC= positive. I had had it for many years. Had hep in the military 1977 before they knew about hepC.

Hi Thank you for your response. I will check out the other page as well as the video. Thank you. We live in the Greater Boston area so right now Mayo is not in our future. Working with a couple of doctors at Boston hospitals. Hoping maybe someone else had similar symptoms and could point me toward a diagnosis.

Thank you

No cat scans or MRIs. Will check on the autoimmune markers. Did have some more tests run today. Thank you.

Thank you, very frustrating. I'm glad you figured out your ailment.

It sounds like he is constantly fighting something. Has anyone checked his IgE, IgA, IgM, IgG and IgG subclass levels?

Hello, yes just can't figure out what is attacking him. We just had more blood tests done and I believe they tested for what you suggested. I will double check and suggest the above if I'm wrong. Thank you