Recommend a dr?

Sjogren's Syndrome
#1

I’m having symptoms similar to sjogrens but also with neurological symptoms. The first rheumatologist I saw told me he couldn’t help & to go to a neurologist. I’d like to find a rheumatologist who is good at diagnosing unusual conditions/sjogrens! Or at least willing to help me figure this out! Here is my direct email if you can help me! I’m at .

My main symptoms now are dry skin, dry hair, dry eyes, rashes, thinning hair, joint pain without swelling or redness, intermittent pain in my finger tips (no numbness, no tingling, no color changes - just stabbing pain in finger tips & some times toe tips), internal itching in my right breast, and lack of energy. The weirdest part is that it’s like my body doesn’t distribute moisture properly?!? Like its dehydrated but I drink plenty of water & my urine is never dark.

ANA test came back abnormal. Tests of the kidneys, pancreas, and liver are all normal. Tests of cholesterol, thyroid, and diabetes are all normal. Tests of rheumatoid factor, sed rate, and C reactive protein are normal.

Thank you so much for taking the time to read through this!!!

#2

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Hopefully the neurologist will help you. I have very similar problems, s=
o I
would be very interested in what the doctor says. I also have itching th=
at
is so intense that it burns. Possibly nerve related?=0D
=0D
=EF=BB=BFHugs, =0D
Jacy =0D
~This email is my personal opinion and worth exactly what you paid for it=
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No refunds or other guarantees. It is a natural hand made product. The
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r
and beauty and in no way are to be considered flaws or defects.=0D
-------Original Message-------=0D
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From: Bmurphy=0D
Date: 4/15/2008 12:24:15=0D
To: jacymail@comcast.net=0D
Subject: [sjogren] Recommend a dr?=0D
=0D

#3

There were more comments I forgot to put in regarding your back pain. Mine started with flank/back pain - I thought my kidneys were failing. After numerous tests in the ER, they released me with a diagnosis of “back pain”. That horrible, knock you to the floor pain, went away while I was in the ER. But the ache in my flank & sides continued. They xrayed, tested, etc… my kidneys, liver, and pancreas and could find nothing unusual. That’s when I gave up. Other problems came up later that I never connected to it until now. Here I am about a year after I gave up, asking for more testing & thats when they discovered my ANA was high.

I never had an autonomic nerve test done so you’ll have to fill me in on that! But then, I never made it to a neurologist (probably the only specialist I had not seen, LOL).

Not sure what you meant by the highly sensitized nervous system - do you think you were predisposed to a neurologic disorder? Please provide more info!

I have read that AI disorders can, in part, be related to a genetic link.

#4

Hi there,

I also have neurological symptoms and have recently been seeing a neurologist to see if it’s related to the Sjogren’s or if I’m just lucky and have both a neurological disorder AND Sjogren’s! I have severe chronic pain that is mostly in my back, but has given them cause to call it Fibromyalgia which I am just afraid is a catch-all for treatment-resistant chronic pain with no known cause or cure. We think mine might be related to my autonomic nerves, and, in fact I had an autonomic nerve test done the other day and though I don’t have the official results yet, all I know is that I made the machine go bananas! (Yes, that’s the technical term. Lol.) The biggest issue is that no traditional medicines for depression, anxiety, or pain seem to work with me. If, however, it is a nerve thing, that would make sense, no?

I think my situation may be related to a highly sensitized nervous system, and was wondering if anyone else had experienced anything similar to this weird combination of symptoms. Stranger still, I read about Pavlov’s salivating dog study yesterday and a condition called “transmarginal inhibition” experienced when the nervous systems begin to shut down, one by one, producing very strange symptoms. This condition was able to be quantified and studied only by the major visible symptom of the absence of saliva. Weird that that’s also one of our only measurable symptoms of Sjogren’s, no?

Please write if you have any thoughts - even if it’s just to tell me I’m crazy and there can’t possibly be any relation…

Thanks!!

Elena

#5

Elena,

Gosh, so much has happened in the past week! When I found out last Fri that my ANA levels were high, I was able to pin point my problems to an autoimmune disorder. I meet with another rheumatologist next Mon to interpret the results - that should help to narrow it down to which category of autoimmune disorder. In the mean time, I have been researching and reading everything I can on the subject!!! One thing that I have found is that autoimmune disorders are so difficult to diagnose because they impact many different areas of the body. That was totally my case because mine started out with what I thought was kidney failure (all tests came back okay). Other things happened too - heart/chest issues (all tests came back okay). I was also diagnosed with asthma last year. After reading through the literature, it is all tied together! The excerpts I read from the books The Autoimmune Connection and the 2008 Autoimmune book that just came out also indicated that many AI diseases flare up after childbirth (which is when my symptoms started!). Last, I’ve read that the tremendouse increase in AI cases is due to environmental issues - we are exposed to more chemicals & toxins than our predecessors & the AI is a result. SO ENLIGHTENING!! I already had my kids on organic food but now I realize I was only doing a small part in protecting them - so we are making big shifts to natural products asap (no more plastic, no nanoparticles, castile soap, etc…). (I’ve been VERY busy since last Fri!!!).

Before I forget, if you suspect any autoimmune connection, I would ask your dr to run an ANA test, rheumatoid factor, sed rate, C reactive protein, and a saliva test to test hormone levels - when you take the saliva test, it only works if you take it during a certain time frame in the month - the dr should be able to tell you exactly when. Good luck & hang in there - I know first hand how heart wrenching this whole thing is!!!