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autoimmune related symptoms?

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Old 11-04-2011, 04:58 PM   #1
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autoimmune related symptoms?

Hi all,

I have had things happen just one time that were odd. Such as having my right hand and forearm turn so cold that I could bang it on the table and not feel it.

My left thigh would burn with achiness. Then one Christmas Eve, I had vertigo and went to the walk in clinic, was told I had hyper reflexes, go to the neurologist to rule out MS. That started a 10 month journey of tests and second opinions, even being on meds, only for it all to fade and I was told everything was....normal.

I had pink urine one time, went to Yale for a urogynecologist to examine me during surgery (same time as endometriosis surgery) to get a diagnosis of interstitial cystitis. Went to urologist every 6 months, for a year or two, labs come back fine each time, only for it all to fade and i was told everything was....normal.

I have had sensitive skin, hearing, stomach, eyes, but nothing specific, just how God made me I guess. Oh, and sensitive feelings too, I don't like going to these doctors so much, I hope they won't yell at me.

I had an endoscopy, with esophagus dilation 5 years ago, due to food sometimes (not always!) getting stuck. This summer the stuck feeling came back, the dilation did not work, then I had a barium swallow came back normal. Last week I went to Yale for a swallowing motility test. I am waiting for the results in another week or so.

I have had shortness of breath~on exertion~! I emphasize this, because my pulmonary function tests show I have small airways disease, the pulmonologist says I do have asthma, I firmly disagree. It's a totally different thing, this shortness of breath! I have had treadmill testing, a nuclear treadmill test too, PFTs, CT scan, EKGs, etc........ only for it all to fade and I was told everything was....(everybody sing! ) NORMAL.

I have had Raynauds a few years ago, fingers would throb so much that I would cry. They were beet red. But not the unique kinds of colors you can see on the internet pictures! I was on nifedipine but I felt the millisecond it hit, ughhh, so the dr. let me go down to half a dose. Then I got off it as the weather warmed up.

Now I have a suggestive subacute cutaneous lupus phrase hanging over me, as found by a biopsy of an active lesion. All bloodwork labs by the dermatologist and rheumatologist say I am fine, just a bit anemic on the CBC.

I wonder if I have a combination of autoimmune stuff going on here. I have started to say I am Sampler Suzy, I have a smidge of this and that, and nothing specific.

Thanks for reading my story. I love to read, here's my own novel.


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Old 11-05-2011, 06:54 AM   #2
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Re: autoimmune related symptoms?

Reader, hi & welcome. I had the annular (targetlike) form of SCLE rash for many years. (There's a second SCLE rash called psoriasiform, that looks like psoriasis but isn't.) I'd had many episodic problems since having at age 13 a full year of big pain, low-grade fever, elevated ESR, and dspressed WBC.

Each decade afterward, some new problem arrived. e..g., chronic GI misery (diagnosed as irritable bowel). Swallowing problems. Migraines. Urinary misery (interesting, my urologist thought IC but thought I wasn't quite bad enough to warrant doing that knock-out test). Anemia. Last problem: those weird targetlike lesions, which none of the local dermies I saw (many!) had a clue about.

I finally took myself to a teaching-hospital rheumatologist who immediately suspected a subset of lupus called "Ro-lupus". He re-did my bloodwork & urinalysis (anti-Ro was FINALLY found positive).

Rheumie referred me to a dermatopathologist, who did immunofluorescent stain tests on my two older skin punches, also did an all-new punch. Those stain tests appear to be what's called a "lupus band test". One hallmark of lupus is that "immune junk" is deposited between the dermal & epidermal layers of skin. These often (not always) light up in "bands" unique to lupus, when subjected to those stain tests. Meaning, skin tests ALONE can confirm lupus.

As to what caused my rashes: clearly sun (I hadn't been on any meds).

So that's what got me out of limbo: finding a rheumatologist & dermatopathologist familiar with SCLE rashes & familiar with the lupus symptoms this subgroup is likely to have. The key to my skin findings: a specialist who knew how to go beyond microscopic findings & do those stain tests.

To this day, I'm puzzled that my local specialists knew nothing about the SCLE rashes, in that those rashes were first identified in 1978 or thereabouts. And over 20 years later, nada! Hope something here helps & that you post more soon. Sending my best wishes, Vee

Old 11-05-2011, 07:46 AM   #3
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Re: autoimmune related symptoms?

Thanks for that info Vee. I adore my dermatologist, and will see her on 11/30. I will be taking notes to see if we can go beyond the biopsy and I will bring the suggestions of stain testing that you mentioned.

(I outlined that particular part of my story in another post prefixed Cutaneous).

Since she is the one who initiated this biopsy, it sounds like she's at least aware of these lupus skin issues and would want to know more info. An open minded doctor, yayy.


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