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?

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@peach414144

would appreciate a reply from anyone. have been diagnosed with rheumatoid and psoriatic arthritis. (autoimmune) seems all that can be done is weekly injections of methotrexate injections. tylenol does absolutely nothing. will refuse any controlled substances. WHEN either my feet, knees, hands, elbows, etc. swell,red hot and painful for at least 3 or more months at a time, hand braces, leg boots, etc. are used and then nothing else is done. will just suffer untill it slowly goes away. AFTER A WHILE I FEEL THE PAIN IN, YES IN THE BONES GOING UP THE BONE (like in the marrow) FOR 6 OR MORE INCHES. this has been going on for many, many years. have had an anemia for as many years. the anemia has gotten very bad cannot be myself physically as before. the hematologist does not treat me for this except 3 years age gave me a ferritin infusion. been slowly going downhill. am i being treated properly?

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Meloxicam helps me a lot... Its just a strong anti inflammatory

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Thank you EVERYONE for your responses and supports. I have kept diaries... I do have flares. I am very photosensitive even a few minutes in the sun i get a rash. I have a butterfly rash that comes and goes. Abdominal pain, roaming joint pain between my finger knuckles, toe knuckles, knees, wrist and shoulders. I was recently diagnosed with "mild" carpal tunnel so all my hand wrist snd finger pain the doctors blame on that. I have weird not itchy rashes all over my body. I have granuloma annulare (a non itchy ring worm looking rash)on my feet and legs... Its horribke looking i have to where long socks to cover it. I know there is something wrong i just need my blood to cooperate.

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@hchristopher, those are some very strong Lupus and inflammatory arthritis symptoms (sun sensitivity, butterfly rash, flares, joint pains) I don't know enough to wager a guess, but I do hope you can be seen by a Rheumatologist at a major center who knows which tests to run for a differential diagnosis. You may have more that one systemic issue going on; hard to know if all of your symptoms emanate from ONE source. While you might not have all the markers for a particular diagnosis, a specialist would know how to help treat your symptoms, and set up a plan to "observe" for future markers, and perhaps help you to reduce the number and intensity of flares. I do hope reactive arthritis due to infection has been ruled out. I pray you will get some answers and a treatment plan that makes you not only feel better, but also more in control of your wellbeing.

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@peach414144

would appreciate a reply from anyone. have been diagnosed with rheumatoid and psoriatic arthritis. (autoimmune) seems all that can be done is weekly injections of methotrexate injections. tylenol does absolutely nothing. will refuse any controlled substances. WHEN either my feet, knees, hands, elbows, etc. swell,red hot and painful for at least 3 or more months at a time, hand braces, leg boots, etc. are used and then nothing else is done. will just suffer untill it slowly goes away. AFTER A WHILE I FEEL THE PAIN IN, YES IN THE BONES GOING UP THE BONE (like in the marrow) FOR 6 OR MORE INCHES. this has been going on for many, many years. have had an anemia for as many years. the anemia has gotten very bad cannot be myself physically as before. the hematologist does not treat me for this except 3 years age gave me a ferritin infusion. been slowly going downhill. am i being treated properly?

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@oldkarl, yes you have hit the nail on the head. amyloidosis sounds like what i may have. have looked up the symptoms even up to the glaucoma, seems i fit the description. now, what specialist doctor does one see to ascertain if this is what i may have? appreciate any kind of help. thank you, peach414144

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@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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@hchristopher, do any of your meds mention autoimmune side effects or "antibodies" in the associated literature? (You may need to go online and look at the longer documentation that manufacturer's author instead of the brief handout that usually comes with the prescriptions.)

I experienced drug induced lupus for an entire year, and it turned out to be entirely-caused by one of the medications that I was taking. In the longer literature I found online, it included a paragraph about developing antibodies to the drug. The literature didn't overly state drug-induced lupus or autoimmune, it only said the word antibodies. Luckily, my pharmacist had a major clue, and he helped me figure it out because I had no experience with autoimmune conditions prior to this happening to me.

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@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!

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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

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@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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