Autoimmune? Or is it all in my head?

Posted by hchristopher @hchristopher, Sep 17, 2017

So i am just going to get right to the point… I have been through several docs and still no diagnosis. I show 80% of the lupus symptoms and ALL of the RA symptoms. My blood work was positive once… Ana anti-dsdna inflammation etc. Now it’s bern negative 2 times and i am getting told it was probably a false positive. False positive?!?!?! Then why do i feel so shiity. I see the internet full of people like me… I think the rhuemys need to quit beimg so stingy with the seronegative diagnosis. I just want a name to what’s wrong with me… Os that too much to ask?

@johnbishop

Hello @hchristopher, welcome to Mayo Connect. We are glad you found us. I can understand your need to know what’s wrong with you. That’s the first step in getting a handle on treating the condition and most important. I don’t think you are alone either. There is a really good video with discusses the topic:

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?utm_source=tedcomshare&utm_medium=email&utm_campaign=tedspread

I don’t know if it’s a possibility for you to make an appointment with one of the Mayo Clinic locations. Mayo Clinic is very good at diagnosing rare or complicated conditions with all their specialists at one location. There are many success stories here on Connect. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:
http://mayocl.in/1mtmR63.

John

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That is one of the scarier things I’ve heard on this site!

Hi Christopher, I spent from 1991 to 1994 going from Dr. to Dr. and being told my bloodwork looked great and maybe I should see a psychiatrist (which I did for all the good that did me). Sometimes the Doctors just don’t know, and it is hard for them to admit that. You know how you feel. I would suggest that you gather as much data on yourself as you can. Make food logs, chart your sleep-Sleep is key! I finally found a Rhuemy who diagnosed Fibro, but that is a deep bucket. I find most relief from alternative modalities-Yoga, Acupuncture, reflexology, and I try every snake oil that sounds promising. They are mostly benign. But I cannot sleep without meds. Regards, Robbinr

@hchristopher I don’t have all the tools, so I cannot offer a diagnosis. But I can suggest a few things. First, have a look at my story free (not selling anything) at https://bit.Ly/1w7j4j8 titled Amyloidosis Version 12. Most folks prefer the pdf version. The reason for you to read this is to make sure you understand your diagnosis(dX) is a journey, not a moment in life. Also, you are displaying some of the symptoms of various types of Amyloidosis, including ATTR, LiteChain, Multiple Myeloma, and a few others. Find a hematologist trained in Amyloidosis. That has been the most difficult portion for me. Most of them cannot even spell the word. There are major clinics and labs in most states who can and will handle this. Start by watching some of Martha Grogan’s videos from Mayo-Minnesota. But be prepared for a long journey. Mine has taken me several decades. It really is an exciting life. One wonders what folks who have no such journey to make can do to keep the fun in life. And if you become certain you do not have one disorder, look at another. Most doctors will appreciate your efforts to identify your own disorder. That makes it more efficient to find the proper crutch. And keep your mind at peace with this. It is not a matter of failure, but a celebration of staying alive this long.

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