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Need Dr. House Could it be Sclero?

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#1 Bob_nj_



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Posted 21 March 2010 - 06:51 AM

I've seen about 30-40 doctors over the past few years with no firm diagnosis. Perhaps some of you are familiar with this constellation of symptoms and can offer some advice!

1) About 4 years ago: Rash covering most of my chest, red, thickened skin, EXTREMELY itchy when exposed to hot water (shower) much less itchy during the day.
2) Next recurrence of rash about 3 months later, this time my ankles and shins. Not as much skin thickening, but same sensitivity to hot water.
3) About 6 months after initial rash, painful and swollen joints (wrist, thumb, index finger) lasted about 2 months. Very painful.
4) Rashes recurring every 3 months or so, always bilateral (both sides of my body) or midline (lower back/spine area, anus, nose etc.) Rashes have been getting milder but still recur with approximate 2-4 month frequency.
5) After about 2 years (from initial rash, about two years ago) severe sleep disturbance and cognitive difficulties. Sleep studies (4 of them) show NO slow-wave sleep. Exhausted all the time. Lots of Alpha wave activity during sleep.
6) Concurrent with sleep problems, 24/7 mild headache and feeling of "pressure" in my head.
7) Often sleep with sensation that "half of me is awake watching the other half of me try to sleep".
8) Vision (near) getting worse - could be unrelated as I am 48, but it coincided with other symptoms. Night-time peripheral vision seems particularly worse.
9) Have acid reflux and have had it for some time.
10) Had recent bout of gastritis.
11) Most dibilating symptoms: extreme fatigue and difficulty to concentrate, memory (short term), focus. Had to stop working in 2/09.
12) Some weird REM issues (sleep paralysis occasionally, vivid dreams while partly awake) etc. Lying in bed wanting to speak to my wife (and doing so "in my mind" but unable to physically talk or move my mouth -- not able to determine the extent to which I was asleep versus awake.

What's been done:
1) Top vector-borne disease expert believes not lyme or lyme like illness. Extensive testing was done.
2) Brain MRIs and CT scans negative (no apparent tumors or lesions)
3) Blood work: consistently elevated peroxidase (but normal thyroid function), one instance of high ANA (1:640 homogeneous) followed by several negative ANA tests, low vitamin D (now on supplements)
4) Endocrinologist did work up, negative findings.
5) Spinal fluid showed slightly elevated protein and slightly low IgG AFTER 2 courses of steroids -- unknown if it would have been higher prior to steroids
6) Rheumatologist feels likely Lupus although no classic butterfly rash. On Plaquenil 7 months which has helped with "pressure headache" but still do not get restorative sleep and rashes still coming back though not as severe.
7) To attempt to get restorative sleep, tried the following (none worked at all to help me sleep better and feel rested): good sleep hygiene, ambien, ambiencr, lunesta, sonata, seraquel (off-label for sleep), trazadone (off label for sleep), klonapin (2 to 4 mg which is a huge dose) helps a little but not a good long-term solution, large doses of anti-depressant. NOTHING helps me achieve restorative sleep.
8) Psychiatrist believes physiological not psychological -- has never seen anyone with sleep difficulty not respond to any meds. Tried antidepressants too (Zoloft).
9) Sleep neurologist and rheumatologist recommended Xyrem for sleep -- just starting it and trying to adjust dosages. Unsure if it will help, but think that regardless, it is treating symptoms not underlying problem.
10) Skeptical of Lupus diagnosis (no butterfly rash, rashes not typical of Lupus)

House -- where are you?

#2 Jeannie McClelland

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Posted 21 March 2010 - 08:14 AM

Hi Bob,

Welcome to the Forum.

It seems to me that a number of your symptoms could be caused by scleroderma, some sound unlikely, and all could be caused by any number of other things~

I had to smile when you said you were skeptical of a lupus diagnosis because you don't have the typical malar rash and the rashes you do get are atypical of lupus. I was a bit disbelieving of my systemic sclerosis diagnosis at first because I don't have skin thickening or sclerodactyly and everybody knows you have to have those to have scleroderma (not!).

Please bear in mind we aren't doctors and neither can nor will offer a diagnosis. If I were House, however, I think I'd be looking at environmental causes, something like exposure to noxious chemicals. Posted Image

Best wishes and good luck in getting the right diagnosis, proper treatment, and best of all, a good night's sleep every night.
Jeannie McClelland
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#3 Shelley Ensz

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Posted 21 March 2010 - 10:34 AM

Hi Bob,

Welcome to Sclero Forums. I'm sure you can appreciate that we are not medical professionals and are completely unable to diagnose anyone; that is really a matter for our medical team. And if they can't do it, who can, really?

All I can suggest is, if you are questioning the lupus diagnosis, that you have two apparent avenues of investigation that can help provide more input for your doctors to consider.

The first is, to consider asking your psychiatrist to do a complete round of mental health testing on you (if they haven't already, that is.) What you need is to know whether any of your symptoms are caused by anxiety, because nearly all of them (even rashes) can fall into the realm of either lupus or anxiety and some of them (heartburn, gastritis) might fall into the realm of medication side-effects.

And the flip side of that, having any/all mental health issues entirely ruled out, would enable your medical team to look deeper into other possible diagnoses. A distinct way to address that would be to have a skin biopsy done on your next rash, as well. The next time you get a rash, do not delay, see your doctor immediately so they can see and (hopefully!) biopsy it right away. That has been the initial or final clue for many diagnoses -- especially when it comes to things like lupus, psoriasis, eczema, and scleroderma.

In the absence of things like Raynaud's, visibly tightened skin, positive skin biopsy, lung fibrosis, facial telangiectasia, endoscopy results that show scleroderma, definitive scleroderma bloodwork, and so on and so forth, a consideration of scleroderma would be far less likely (than lupus).

It wouldn't do you harm, while you're at it, and if you haven't already, to have a complete allergy panel done, in case any of your symptoms are inspired or worsened by allergies.

So, in the meantime, just based on what you've shared in this one post -- and bearing in mind I don't even have so much as a First Aid certificate -- I'm prone to think that you might find the lupus forums more helpful than ours. Not everyone with lupus has a butterfly rash. And the lupus forums are better enabled to suggest similar/related/confusing illnesses than we are, if that remains a concern of yours.
Warm Hugs,

Shelley Ensz
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#4 mumsy613



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Posted 06 April 2010 - 06:27 AM

Sadly, it is possible to have both lupus and scleroderma. My lupus diagnosis is 10 years old, but two years ago I began to have symptoms of scleroderma. Diagnosis is now SLE (systemic lupus) with overlapping features of scleroderma.

Random rashes other than the classic butterfly are also common with lupus.

CNS lupus can produce many neurological symptoms from mild memory problems to dementia or psychosis. "Brain fog" is common in lupus as well as extreme fatigue. Sometimes the list seems almost endless.

In my opinion, your best shot at a diagnosis is to find a rheumatologist who specializes in autoimmune diseases....meaning someone who specializes in lupus, scleroderma, etc. For lupus: Cleveland Clinic, Johns Hopkins, UCLA are standouts. UK has excellent centers for autoimmune diseases. In any case, an academic setting is most likely to produce a diagnosis as well as the latest and greatest in treatment.

That is my experience anyway. :) Best of luck. Fran