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Brie (@brie87144)

Autoimmune diagnosing problem

Autoimmune Diseases | Last Active: Dec 4, 2018 | Replies (211)

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Don’t give up. There is always a little bit more that can be checked, a fresh set of eyes could make the difference. Have you had an expert work up by a rheumatologist/immunologist? Have the basic autoimmune markers like ANA been checked and inflammation or lack of it noted? I can’t pretend that I would catch anything that all of these experts have missed. I’ve heard of strange syndromes following an infection like:
but there are less obscure things that can cause strange overlapping symptoms, like Lyme Disease.

If you haven’t seen an rheumatologist/immunologist put that next on your list. If you have, you might want him/her to check for more antibodies. I was very sick for several years and kept going to the doctor and complaining about it. They ran lots of blood work and found nothing other than mild anemia and that I carried HLA-B27. I started having episodes of freezing, shaking and weakness lasting several hours. Eventually I collapsed in the waiting room and when I was admitted into the hospital they ran some tests and told me that I had Grave’s disease and was experiencing thyroid storm. Not a parallel with you but the point is that I bugged them for several years and it turns out they never ran thyroid tests until I almost dropped dead. Even good doctors can have a blind spot so you have to be a squeaky wheel, unpleasant s it may be. Hang in there.

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Replies to "Don't give up. There is always a little bit more that can be checked, a fresh..."

Thanks for your reply. I have been tested and carry HLA B27 . ANA is low positive , moderate range for lupus although all makers were negative. Not quite sure where that puts me. I am new to all this.

I just pulled together a couple of sites that might help you navigate through the maze of the testing and diagnosis.
You probably know that HLA-B27 is strongly associated with a family of diseases but having the marker in no way means that you have one of them. I carry HLA-B27 myself and do not have aa problem related to it that I know of.
I couldn’t find much about HLA-B27 related disease, if that’s what’s suspected, being treated with plaquenil but that doesn’t mean that it doesn’t happen.

This might help you as a guide to lab tests for just about every autoimmune condition. You’ll need to page through until you hit the list of diseases then follow that to tests:
Since you are not on a powerful anti-inflammatory like prednisone I assume that your ESR and CRP were ok.

Sorry if you mentioned this but did you report having any skin problems to your doctor?

I know that this is kind of contradictory with giving you a bunch of info but don’t get too hung up on the tests and what it all means. The layers of complexity just keep expanding as the onion gets peeled. At some point you’re going to have to feel that you have a clinician that you have faith in and put it in their hands. That’s not to say you shouldn’t be an active partner in managing your own health. That’s a given.

Hope this helps.

Thanks again for your reply. I have been on prednisone several times and each time my condition clears up. I am feeling very frustrated right now. I am dealing with some diverticulitis, a mild case, but I have had Levanquin and flaghl added on to the pills I take. I take 10 pills throughout the day. This assures that I have an upset stomach all day. Sorry for the wining.

Don’t worry about complaining. Being stuck with a condition that seems to be unpredictable and mysterious, as autoimmune conditions often can be, is vexing and can easily draw a person into preoccupation. That seems to me to be a rational response.
You say that you have been on prednisone off and on, do you mean a prednisone titer starting at a high dose and tapering, or s steady dose for an extended period? When you say that your ‘condition’ clears up during prednisone, what are the primary symptoms that clear up?
I take it that after reviewing the lab tests I provided you didn’t see any pattern that matched what you experience, like a positive anti-sm, or some positive markers for mixed connective tissue disease, which can affect multiple systems?
Sorry if some questions are redundant. I’m not trying to diagnose this. I’m not qualified to do that. Just trying to narrow down.

Since prednisone helps intermittently, are you on weaker anti-inflammatories, such as nsaids, on a regular basis?

The doctor never said explicitly why he put you on plaquenil? If not, you may want to ask.

Here is the whole story. I have had sinus allergies and mild asthma my entire life. I have gone through 5 sinus surgeries. I have been tested by multiple allergist who said all test come up negative, diagnosis is nonallergic rhianitis. About 5 years ago my dentist notice white lesions on my gums. I saw a specialist and he said it was not cancer but a autoimmune disease. It is mostly there all the time ,but it seems like if I get a bad cold it flares up. 3 years ago I started to lose hearing in right ear along with some dizzyness and ringing. My ENT put me on 50 mg. of prednisone for two weeks. Things got worse and was making me loose weight and not helping the problem. He then reduced the dosage to 30 mgs. for three more weeks. This didn’t help either. I then went to UT Southwestern where I was given 10 mgs. of decodron shot directly through my ear drum once a week. Within a month I was cured. The doctor thought it was a virus.
I started to notice a lack of energy, so I got my adrenal glands tested. It showed I had secondary adrenal insufficiency. It took close to a year, but an endocrinologist got them back and working. I noticed while on this long tapper of prednisone that at 7.5 mgs. I felt great. I have since had my adrenal glands test and the test come up normal.
I have also had L5 lamentomy, got bit by a neighbors dog ,had arm infected, ended up. in hospital 3 days for around the clock antibiotics. I then had rotator cuff surgery due to dog bit.
I have diverticulitis at this time an on Levanquin and flaghl. All my joints ache and I am fatigued all the time. If I am out in the sun I get tired pretty quickly which last the entire day.
No rash but burn easily.
Did I mention I have Hasimotes disease
(Autoimmune panel):Showed borderline positive ANA (nonspecific autoimmune marker),panel results is in moderate positive for lupus range although all lupus specific markers are negative.
Celiac panel negative
Did I tell you I worked on the Fire Dept. for 28 years as a captain. A friend of mine use to work for the military thought I might have PTSD syndrome. I thought she was nuts, but it turns out police and fire are subject to it.
That’s all folks

Thanks for all your thoughts

Sorry to heŕe that I also have auto imune disease when I am not fealing
good I know its that.I hope you feal well soon

NOTE from the Community Director @colleenyoung
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Kimberley, This is a sad story indeed and we’ll all hope that she gets what she needs to survive. But I’m not sure if this is the right site for fundraising. Adding Colleen on that question. Probably more of a Facebook thing.

Please remember the ANA is NOT a test for lupus. 97% of the people who have lupus have a positive ANA, so you can’t rule it out. Also, there are perfectly healthy people who have a positive ANA. A diagnosis should be based on your medical history, blood work, clinical findings, and other tests the doctor may perform.

My husband has Wegeners which originally started in his ears, eyes and sinus infection. He repeatedly went to doctors for these conditions. Didn't get diagnosed with Wegeners till his kidneys completely failed. He had a high C-anka. Wegeners was finally found through a biopsy of his kidneys. Very rare autoimmune disease. Don't know the cause but he too worked around chemicals for 22 years in the military.