Aggravation with results

Posted by kawhortny2023 @kawhortny2023, Jun 5 11:03pm

Hi All,

So, I have HS. It's an autoinflammatory disorder, also called acne inversa, for the brave people wanting to look it up. I've have it since I was 12, wasn't diagnosed until 2020, I was 32. All along , I've had issues with my hands , more specific the joint in my hands . I have had my PCP run some tests, my ANA came back positive, so I made and finally saw a rheumatologist , thinking I might get some answers. My RNP came back as abnormal, my ANA was still positive, all the symptoms I told her, the fatigue, reoccurring fevers , my pain in my hands, I had a seizure like episode, and she pretty much just blamed my HS. That my tests were just false positive, and I felt very dismissed like she wasn't listening to me. Is it always this hard to get diagnosed? She made me feel like the symptoms I feel are in my head, and that my body doesn't flare up and attack itself. I'm just annoyed.

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@windyshores

@sharing thanks, I have good doctors and was diagnosed with lupus 20+ years ago.. However, an ANA by itself doesn't show any specific autoimmune disorder, as you said, and in fact does not even show the presence of any autoimmune disorder, since some healthy people have positive ANA's. So I am curious how you got your diagnosis of lupus or of Hashimoto's.

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You are correct. It’s a crapshoot, really and unfortunately. We’ve progressed so far that lupus is not necessarily a death sentence. 50 years ago, my aunt had lupus but it was the kind that affected her kidneys. Her daughter has discoid.

I was accidentally diagnosed with both, but before the ANA, thyroid levels were sky high so after a test, Hashimoto’s. I DID have Grave’s about 10 years earlier. Was told it was in remission.

I have had thygeson’s punctuate keratitis about 20 years or more ago. Lost vision in one eye for 2 weeks. Again, it went into remission

I’ve been tested and am sensitive to any meat except seafood about 30 years ago. Also asthma, but not really.

The autoimmune issues probably all fall under the lupus umbrella. And, since my early 20’s, I have dealt with illness accompanied with the feeling everyone thought I was crazy. My own husband thought I was coming apart at the seams, lol, but it was Grave’s disease so bad I took propanol for a couple of years.

I hope this helps?
Love, Sharing

Also

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@windyshores

@sharing thanks, I have good doctors and was diagnosed with lupus 20+ years ago.. However, an ANA by itself doesn't show any specific autoimmune disorder, as you said, and in fact does not even show the presence of any autoimmune disorder, since some healthy people have positive ANA's. So I am curious how you got your diagnosis of lupus or of Hashimoto's.

Jump to this post

@windyshores
I got diagnosed with Hashimoto’s via thyroid panel bloodwork (TSH, T3, T4, and TPO). You need to know if thyroid autoantibodies show up which means your immune system is attacking your thyroid gland. Some people may have sub-clinical thyroid issues because what is “normal” for them may differ from the “normal” reference range. For example, the maximum on the reference range for TSH may be 5.0 but I was like a zombie when my TSH went above 2.0. Doctors need to listen to patients’ symptoms and not just test results. Many do not listen and in my experience, many do not even review the results of the tests they sent you for. It is a crazy, wasteful healthcare system that does not care for patients. It is a for profit system that does not care about the quality of life for patients.

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Hidradenitis is an autoimmune inflammatory disease
with prominent skin lesions. It can be accompanied with
joint and inflammatory bowel issues as well.
The current treatments have provided renewed interest
in HS and it’s causes including hormonal therapies.
Biologic antibodies and disease modifying inflammation
blockers have been the best treatments of choice for moderately severe and persistent symptoms.
Consult a dermatologist and rheumatologist for second opinions. You may need to be seen at a university or multi specialty clinic to get the best care.

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Hi All, again, thank you for all of the responses, a lot were informative. So autoimmune disorders runs in my family. I realize that does not mean I would get anything, but my dad had undiagnosed HS. I know this because when I told him what was going on, he said, shoot, I gave it to you kid. Lupus, RA, arthritis, HS, psoriasis and eczema all run in the family, I did a lot of asking after I found out my dad had it too.

The rheumatologist did say that unless I go and get my symptoms diagnosed, at the time I'm experiencing them, that she can not say for sure that I have experienced them. One of the main reasons I think I have more then just HS, is around 5 years ago, I had what the hospital called "seizure like" episode and after that, is when I really noticed myself having more issues with my health.

@larak give your stepdad a huge hug and let him know he's not alone in the fight !! 🥰

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@dlydailyhope

@windyshores
I got diagnosed with Hashimoto’s via thyroid panel bloodwork (TSH, T3, T4, and TPO). You need to know if thyroid autoantibodies show up which means your immune system is attacking your thyroid gland. Some people may have sub-clinical thyroid issues because what is “normal” for them may differ from the “normal” reference range. For example, the maximum on the reference range for TSH may be 5.0 but I was like a zombie when my TSH went above 2.0. Doctors need to listen to patients’ symptoms and not just test results. Many do not listen and in my experience, many do not even review the results of the tests they sent you for. It is a crazy, wasteful healthcare system that does not care for patients. It is a for profit system that does not care about the quality of life for patients.

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Completely agree with this healthcare nightmare. The financial and emotional cost and disconnected nature of multiple doctors makes me crazy! So inefficient.

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