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hchristopher
@hchristopher

Posts: 3
Joined: Sep 17, 2017

Autoimmune? Or is it all in my head?

Posted by @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?

REPLY

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

@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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I would also like to invite @kdubois and @kanaazpereira into the discussion to see if they are able to offer any suggestions for @hchristopher.

@hchristopher Have you had the Bindings Serum Free Light Chain assay, and the 24hour urine test for protein in your serum and urine? You should, and Mayo is the great place to go if you can get there. Or Brigham and women’s, Memorial Sloan Kettering, City of Hope or Fred Hutchinson in Seattle. Whatever, be sure to use a lab with the latest and greatest equipment, including an Atom Force Microscope, and the trained/experienced people to do the work.

@i am lucky to have a doctor who, when the blood tests do not show positive for autoimmune disease, the doctor goes by the patients symptoms. searching for a doctor that fits the patient can be a long, long trip. either which way, even with medication the pains are hard to experience, you will not know how long each episode will last and sometimes another episode begins in a different part of the body at the same time so you now have severe pain in more than one area at the same time. it is such a relief when it subsides. it is not an easy road to travel. we understand what you are ging through so continue to believe in yourself as you are not alone.

Liked by carpe_bean

Welcome to Connect, @hchristopher,

Autoimmune diseases can be tough to diagnose; the list of autoimmune diseases is long and varied, and they can often be asymptomatic or share symptoms. You are not alone in feeling the frustration of not getting a clear diagnosis. There are a few discussions on Connect which I encourage you to read:

– Undiagnosed auto immune disease https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/
– Autoimmune diagnosing problem https://connect.mayoclinic.org/discussion/autoimmune-diagnosing-problem-21474a/

@taterjoy @lisabeans @lighthouseceliac @mschock @wesbig @sebley12 @brie87144 @peggy1949 @robbinr @jewel8888 @steeldove do you have any suggestions or insight for @hchristopher?

I have been undiagnosed for 3 years now. I had a positive Ana but all other blood work is negative. My first rheumatologist says it is inflammatory but no diagnosis. Went for a second opinion. She tells me it is fibromyalgia and made me stop my arava which helped bring my pain level down to a 6-8 from the 10+ it was. I am going for a third opinion Wednesday. Unfortunately since so many ai conditions mimic each other, doctors have to rule out things before they can diagnose. We’re you getting any relief from your symptoms? I would keep researching and possibly get another opinion. Your relationship with your doctor should be positive with or without a diagnosis.

I am sorry for your frustration and suffering, @hchristopher. You may have already done this, but if not, you might consider keeping a diary of your symptoms & triggers (if any), which can help a specialist pin down a diagnosis (or rule a few out). Keeping track of what part of your body (or type of tissue) is in pain, the duration of pain in your various pain “zones” (chonic,, cyclical, sporadic, etc), and whether certain “pains” and other symptoms occur simultaneously, or at different times. If your condition seems to worsen at certain times of day, during certain seasons, after specific triggers (foods, environmental effects such as humidity, medications, during/after exercise and/or when sedentary), certain stressors (being in a hurry, work stress, family stress, financial stress, physical stress), etc, it might help in differential diagnosis of your condition. I agree with (@lisabeans, that if you can think of occasions or tactics/treatments that have ever even slightly improved your symptoms, jot those down as well. I hope you can find the help you need, and feel better soon.

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?

This is so not in your head!! But it gets into your head through all the hopelessness and helplessness that comes with this challenge.
The treatment you are getting is medical and probably helping. But other things can be done. I suggest this cookbook and this way of eating to calm your inflammation. I went on it 3 months ago for a month originally and loved how I feel so much that I will probably always do this medical diet. It takes a lot of resources and help cooking when you are not able to. It takes self control and true grit. Not many can do this but I will suggest it anyways. Clean eating with organic produce and grassfed meats is essential to healing the inflammation. Along with medical care you can do many other things. Nutrient dense foods (every bite!!), movement, acupuncture, hypnotherapy, calming music, probiotics, stress ” be gone” ways of living.
Autoimmune Protocol Diet!!! Essential but takes true grit and not many of us can get that accomplished. Take care…really…take control…read everything you can about diet…and take great care!!! Best of thoughts!!!

IMG_4675

@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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@peach414144 (Peachy?) I like that name. Anyway, to answer your question, no! My diagnosis for years has included rheumatoid and psoriatic arthritis. (autoimmune), According to Morey Gertz and Angelica Dispenzieri at Mayo-Minnesota, these two are some of the most important signs of Amyloidosis of various types. And this business of appearing and then disappearing over a few months is just added signs. Amy is a progressive disorder. It starts with one or two cells, then splits every couple hours, then washes away or deposits the misfolded protein pieces/trash in serum, plasma, urine, or various types of tissues. It creates the RA and PA, and by the time you are about 40-60 years old there is enough there to cause real trouble. You need to talk to one of the better centers, Mayo-MN, Sloan-Kettering, Mass General, Fred Hutchinson, Stanford, City of Hope, for instance. They will do the sFLC and 24 hr urine assays, and tell you if your kidneys are spilling protein out into your liquids and tissues, particularly your sensori-motor nerves. You can get a sample of my situation at https://bit.Ly/1w7j4j8. Or go to Amyloidosis.org, the Amy Foundation site. It is quite rare, and some types are always fatal if not treated properly.

@

@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

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.

@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.

@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

@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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