Author Topic: Re: Diagnosing Sjogren's Syndrome: An Introduction  (Read 343 times)

LIZARD66

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Re: Diagnosing Sjogren's Syndrome: An Introduction
« on: March 22, 2020, 10:36:26 PM »
I am desperately in search of a dx. Bloodwork was neg, but I have several symptoms: very dry eyes, nose, mouth and throat; constant sensation of something in my throat; horribly dry, itchy skin; fatigue; elevated cholesterol; weight gain; muscle pain. Who do I see to get dx'ed? I'm in RI, USA. Thank you! <3

Linda196

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Re: Diagnosing Sjogren's Syndrome: An Introduction
« Reply #1 on: March 23, 2020, 04:33:06 AM »
At this point, if you could find someone who would treat without a firm diagnosis, it might be sufficient. The usual specialties who treat these diseases are Rheumatologists and immunologists, with opthomalogists providing support and occasionally diagnostic results that influence the diagnosis.

If you are in a position to screen a new doctor, you might want to ask if they are familiar with the newer testing, Sjo from Nicox/Immco Diagnostics , which has been discussed on this forum and should show up with a search of "new tests"

Unfortunately, the nature of autoimmune disease means that your list of symptoms can indicate a number of different diseases, and while the dryness is a flag for Sjogren's, it can also be present in several others, and some, like Sarcoidosis, don't have specific lab markers that have been identified yet.
Please check out our home page at http://www.sjogrensworld.org/index.html {{INCLUDES A LINK TO AMAZON SHOPPING!!}}
; and live chat at https://kiwiirc.com/client/irc.dal.net/#SjogrensWorld

katie1111

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Re: Diagnosing Sjogren's Syndrome: An Introduction
« Reply #2 on: March 24, 2020, 05:17:40 AM »
I am sorry to say, but for me, since my blood work was negative, it has just taken time for my doctors to watch the symptoms and finally recognize the disease.  The first was my hepatologist.  I have PBC (I do meet the criteria for that) and Sjogrens and PBC are frequently found together.  He referred to what was going on as "symptoms suggestive of Sjogren."  Then my oral surgeon said "You have a Sjogren's mouth."  etc.  It took awhile, but my doctors now agree that regardless of the blood work, I have Sjogrens.

Katie1111




irish

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Re: Diagnosing Sjogren's Syndrome: An Introduction
« Reply #3 on: March 26, 2020, 11:31:03 PM »
I am sorry that you are having problems and I know how miserable it can be. I don't know who all you have seen, but you might find yourself a good Ear Nose and throat doctor. You have so many issues above the neck. Also, the feeling in your throat is similar to what I had years ago. You should probably have your throat checked out. The glands in our throat can swell and give us a full feeling in our throat and it might be that you ENT could pull the symptoms together and get a diagnosis. Try a teaching university if you can. Good luck. Irish

LIZARD66

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Re: Re: Diagnosing Sjogren's Syndrome: An Introduction
« Reply #4 on: March 27, 2020, 03:12:13 PM »
Thank you all so much! <3 Irish, I'll check in with an ENT. Katie, I'll see about a hep, too. Linda, I have a referral being sent to a rheumy. With the quarantine, it's so hard to get anywhere with this. :/