1. < Autoimmune Diseases

I have an ANA of positive speckled at 1:80 .

Posted by suecutuli @suecutuli, May 23 4:09pm

I have so many issues with skeletal and soft tissue problems.; many broken bones and surgery. I also never feel good. I was diagnosed with CRPS 18 years ago and spent years trying to prove that wrong. I have now been diagnosed ( kinda) with hEDS which really fits. I do have managed hyperthyroidism. My main issue is chronic pain BUT I wonder if this ANA is contributing to my poor health. All my other labs look good. I’m just so tired of feeling bad all the time and wondered if any of you have experience with ANA that are out of range.
I did see a rheumatologist but he was dismissive and said I didn’t have Lupus and probably was hyper mobile with some unspecified connective
Tissue disorder. OK wth does that mean ??
Any information would be appreciated

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suecutuli | @suecutuli | May 26 3:05pm
In reply to @annpeters "You have my heartfelt sympathy. I hate it when doctors don’t recognize… Acknowledge that you do..." + (show)
@annpeters

You have my heartfelt sympathy. I hate it when doctors don’t recognize… Acknowledge that you do have a positive test. I wonder if they just don’t know. What an upside down world. For me, I’ve just accepted that my body is attacking itself and there’s going to be all kinds of weird things going on. I’m 69 and just hope to have another good year and then I’m ready to go. All the best to You..

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Yes I hear you. I’m just accepting now too. My PT is not happy with that but I’m exhausted from analyzing everything and not getting support from docs- and in their defense they just don’t know what to do with me. I’m lucky to have all I do have and will have as much fun along the way until I can’t. Thanks for the support

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suecutuli | @suecutuli | May 27 10:48am
In reply to @jordie57 "Have u been diagnosed with lupus? If u research older women with lupus…you will find the..." + (show)
@jordie57

Have u been diagnosed with lupus? If u research older women with lupus…you will find the symptoms are not as severe, and…usually no malar rash. Just other rashes.
I do understand lupus is difficult to diagnosis sometimes because of crossover symptoms of other autoimmune diseases. However, I believe many rheumatologist look at that national criteria and if you don’t meet it, then they diagnose you as negative they don’t think for themselves or bother to research the symptoms that might not be as common with lupus. They simply take a list by the national criteria and check you off and dismiss you if you don’t come close . That’s not a good clinician that’s not thinking outside the box and that’s not trying to help folks that don’t have a blatant diagnosis of lupus

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No the Rheumy just said I Didn’t have lupus.
Since Im still recovering from hip replacement I really need a break from doctors. Although it takes so long to get an appointment now would be the time to start. Thank-you! I do have random rashes.

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1 reply
suecutuli | @suecutuli | May 27 10:51am
In reply to @mayo99824 "I had a high ANA and strange pains and was told I had Lupus and would..." + (show)
@mayo99824

I had a high ANA and strange pains and was told I had Lupus and would die within 5 years. My research suggested Lyme. I had to fight to get treated but did get treated. It took a year of meds but my ANA went back to normal. That was over 25 years ago and I am still kickin’. Consider tickborne diseases.

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My Lyme labs came back negative. But I know that can be hard to diagnose.
Were yours a simple blood work or was it a more comprehensive testing regimen you went through?

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1 reply
jordie57 | @jordie57 | May 27 11:23am
In reply to @suecutuli "No the Rheumy just said I Didn’t have lupus. Since Im still recovering from hip replacement..." + (show)
@suecutuli

No the Rheumy just said I Didn’t have lupus.
Since Im still recovering from hip replacement I really need a break from doctors. Although it takes so long to get an appointment now would be the time to start. Thank-you! I do have random rashes.

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God bless you with the speedy recovery. Hope that you are back on the mend soon. I am surely disappointed in the rheumatologist that I saw if I wasn’t so disappointed in the medical community, I would seek a second opinion, but if she didn’t think I had lupus then why did she want me on the Lupa strong hydrochloric Quinn

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1 reply
beverly48 | @beverly48 | May 27 1:35pm
In reply to @jordie57 "God bless you with the speedy recovery. Hope that you are back on the mend soon...." + (show)
@jordie57

God bless you with the speedy recovery. Hope that you are back on the mend soon. I am surely disappointed in the rheumatologist that I saw if I wasn’t so disappointed in the medical community, I would seek a second opinion, but if she didn’t think I had lupus then why did she want me on the Lupa strong hydrochloric Quinn

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Hydrochloroquinine is used to treat a number of rheumatological disorder, not just Lupus. It helps treat inflammation.

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1 reply
mayo99824 | @mayo99824 | May 28 12:35am
In reply to @suecutuli "My Lyme labs came back negative. But I know that can be hard to diagnose. Were..." + (show)
@suecutuli

My Lyme labs came back negative. But I know that can be hard to diagnose.
Were yours a simple blood work or was it a more comprehensive testing regimen you went through?

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Back then, early 1990s, the Eliza test was very unreliable. My doctor was an old timer, retired. He suspected that his daughter had Lyme but the province’s health ministry said there was no Lyme in BC. He and his crew collected ticks, had them analyzed, and proved Lyme was in BC. Now that area is considered a hotspot. He did a history, did a trial of meds and my reaction and history proved to him that I had Lyme.

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mayo99824 | @mayo99824 | May 28 12:51am
In reply to @beverly48 "Hydrochloroquinine is used to treat a number of rheumatological disorder, not just Lupus. It helps treat..." + (show)
@beverly48

Hydrochloroquinine is used to treat a number of rheumatological disorder, not just Lupus. It helps treat inflammation.

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Hydrochloroquine also treats and kills malaria and other parasites. I am not convinced your body attacks itself but maybe it is attacking an invader (parasite?) that has not yet been identified. One of the doctors in BC outright told me that I had something but he just could not identify what bug.
I am maybe a bit mean, but it seems like a rheumatologist is a doctor who is not sure what you have, nor how you got it, nor what specifically is causing your symptoms nor how to cure it, but he’ll make an guess. I think a lot of medicine is kinda like that.

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