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Mysterious Auto Immune Disease - still undiagnosed

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Old 09-26-2007, 02:16 PM   #1
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nannie8 HB User
Mysterious Auto Immune Disease - still undiagnosed

Hi all.

Various doctors have been attempting to diagnose an auto immune disorder for many years. Maybe someone out there can point me in the right direction; I know how difficult they can be because the symptoms vary so much.


Age 15 (I'm 41 now): Pericardial effusion, then a pleural effusion. Lots of inflammation throughout my body. (At the time was also diagnosed with a hyperactive thyroid which was treated and eventually cured. Now, it's recently become hypo).

Throughout my life:
Various rashes
Extremely dry eyes, Giant papillary conjunctivitis, inflammatory conditions in my eyelids
Red, splotchy palms
Degenerative disk disease, various back, neck, joint/bone, muscular aches
Very dry skin
Puffy dark circles under my eyes

I tested negative for lupus years ago.

My doc still thinks it's auto immune (a new doc).

Any thoughts or suggestions? Thanks very much.

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Old 09-26-2007, 04:59 PM   #2
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Posts: 205
georgie04 HB User
Re: Mysterious Auto Immune Disease - still undiagnosed

Hi there, the most obvious thing that jumps out at me is Sjoegren's Syndrome. But there are many 'crossover' autoimmune conditions which, as you know, are tricky to diagnose.

If you have not had a full autoimmune panel run recently then that would be an obvious place to start. It can sometimes take years after the appearance of symptoms for results to show in blood tests, so just because you have tested negative for something in the past, doesn't mean it won't show up now.

I recently got a book which I have found very useful - "The Autoimmune Connection" by Rita Baron-Faust. I have just looked it up and there is a chapter on Sjoegren's that lists all the tests you can expect to have and what the results indicate. It also covers the other autoimmunes from a female perspective, plus a very helpful chapter "Navigating the Medical Maze" which gives you some really good information on managing the diagnosis effort and doctors. Maybe you would find that helpful - I certainly have.

Have you got a good rheumatologist?

All the best

Old 09-26-2007, 05:23 PM   #3
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nannie8 HB User
Re: Mysterious Auto Immune Disease - still undiagnosed

Thanks for your reply!

I recently had some blood work run and will get the results on Friday. I do have a new good doctor who is very thorough, so hopefully we will find SOME answers. I am attempting to get my records from when I was sick years ago, but that is taking some time since it was in 1981.

I have had sed rates, etc. checked in the past and they have always come out fine, which is why everyone is stumped. I have a feeling that's going to happen this time as well...but who knows? I almost want something to come out abnormal so I can at least have an explanation for all this stuff. I'm sick of not feeling well and often having strange ailments. I keep them to myself most of the time because I don't want to appear to be neurotic, or a hypochondriac!

One thing I forgot to mention, along with the hypoactive thyroid, I also have high cholesterol Another thing is that three blood tests in a row have shown high platelet levels and I'm not ever sure what that indicates or if that is a dangerous thing...or if it could be related to auto immune disorder.

Thanks again, I'll look into that information.


Old 09-26-2007, 06:05 PM   #4
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georgie04 HB User
Re: Mysterious Auto Immune Disease - still undiagnosed

I have a thyroid problem too and high cholesterol - from what I know the first can cause the second, but should get better with thyroid levels managed optimally. Although my cholesterol has gotten better with adequate management of the thyroid, I have still had to instigate diet and exercise changes to try and manage it.

The book I mentioned says elevated immunoglobulins are also a feature of Sjoergren's and I think (NOT a doctor!) that is platelet-related?

Good luck with your test results - I know what you mean about it being a relief to just know WHAT you've got - I'm in the same boat.

Let us know if you find anything (or nothing). If you have a good doctor that is great, but (not to undermine your confidence) there is one person on these boards who spent years and years trying to get a diagnosis from local doctors without result, she finally took herself off to a reputable teaching hospital and had a diagnosis within a few minutes. So, if you feel you aren't getting anywhere, there are other options to pursue (depending on where you are). I'd much rather know what it is and that I'm getting adequate treatment than this "don't know, let's wait and see" stuff.


Last edited by georgie04; 09-26-2007 at 11:31 PM.

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