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Sjögren's Syndrome Message Board
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Old 08-14-2008, 09:06 PM   #1
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Question New Sjogrens Syndrome

I Have Sjogrens Disease And Have A Positive Ana And Ssa But I Dont Have The Dry Eyes Or Mouth Which Are The Typical Symptoms. I Have The Neuro Symptoms Facial Numbness And Body Numbness Which Can Precede The Other Symps. The Neuro Symptoms Only Account For A Small Number Of People With Sjogrens. I Am In The Southeast Near Atlanta. Can Someone Please Suggest A Sjogrens Disease Specialist Just Because They Are A Rheumatologist Doesnt Mean They Specialize In Sjogrens. In The South, The Biggest Population Of Autoimmune Diseases Are Lupus, Ms, And Others. Please Help Any Suggestions Would Be Greatly Appreciated. Thanks In Advance

 
Old 08-27-2008, 07:18 PM   #2
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Re: New Sjogrens Syndrome

What type of neuro symptoms do you have, I have lung problem and liver problems. Muscle and joint pain. I have primary sjogren's but I go to a immunologist here in Pgh who is great. I don't know if there is a specialist for just Sjogrens. I did see an eye doctor and was advised to continue check ups every 6 months to keep a check because the cornea can be affected if the eye does dry out. I have had extreme vaginal dryness I would not wish on anyone. I have really not read of any real treatment. I am on Plaquenil, no predisone because of the liver. Let me know of what kind of doctor you find other than a immunologist and what treatment they put you on. good luck.
gcb in pgh

 
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Old 08-30-2008, 08:15 PM   #3
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Re: New Sjogrens Syndrome

Hello I Have Numbness In My Extremities And Around My Mouth And Tongue. I Keep Some Type Of Inflammation, My Lips And Uvela Will Swell Up. I Just Dont Feel Good Most Days. I Dont Have The Dryness And Dont Want The Disease To Progress To That.most People See A Rhematologist For Auto Immune Diseases, But I Wanted One Where Sjogrens Was Their Specialty. Its A Rough Disease. Thanks For Replying And God Bless You.

 
Old 10-02-2008, 10:19 PM   #4
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Re: New Sjogrens Syndrome

Here is how I found one......I searched all the hospital sites to see if you could write in the disease then if a doctor would come up......didn't work.......then I typed in Rheumatology, Pittsburgh, pa nothing really came up, then I started with Rheumatology and the hospital with the city and for some reason the University Of Pittsburgh did have a Arthritis and Rheumatology page......on that page it had find a doctor or a disease, you know I clicked on disease and there they all were, in the middle was Sjogrens, I clicked on it and only 4 doctors out of about 40 were sjogrens specialist......I went through their web pages...looked for who had a fellowship......the one I picked had a fellowship at Mayo clinic and had been published......I seen him Friday.....3 hours of everything......he did a bone density test......x rayed my spine and neck......total physical exam then told me on top of everything else I have fibromyalgia.....we discussed medicine.....he explained to me that I don't sleep enough......and put me on medicine to sleep.....I am very bad there I have always fought sleep so now I am sleeping later but its better......I also have other problems but he explained to me that my memory problems could be from the fibromyalgia with the sjogrens.....go hunt for your specialist.......its worth it.....you just have to search harder..... But all Sjogrens Doctors are under Rheumatology, Arthritis or Immunology, Sjogrens can go into remisson but you need to always hydrate.....Be your own advocate, take care and keep in touch....
gcb in pgh

 
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Old 04-21-2010, 11:09 AM   #5
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Re: New Sjogrens Syndrome

You would greatly benefit from a spoon a day of MANUKA HONEY UMF 20+ this boosts the immune system and helps your body fight back, it is natural and has some great write ups.

 
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