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Posts (5)

Jul 19, 2011 · Need help with Mystery Illness--Possible Sjogren's Syndrome?? in Autoimmune Diseases

I am also sorry you have had to go through all those things! I, too, have had a somewhat similar experience over the last 10 years. I was diagnosed with Fibromyalgia in 1998 by a very good Rheumatologist and have been treated for that til present and ongoing. Recently though, I saw another very good Rheumatologist and was diagnosed with Sjogren’s Syndrome. He said I did not have SLE, but the chronic dry eyes (they feel like sand in my eyes) and chronic dry mouth and many other symptomes were indicative of Sjogren’s. He put me on Plaquinil (generic form) and after about 4 months I feel some better, but not where I want to be. I have both Central and Chronic Obstructive Sleep Apnea and that causes me more problems than anything. I have had several sleep studies and I cannot sleep without a BiPAP machine without paying consequences. I hope you find out what is wrong, I know you are tired, but keep up hope and never give up, that is what keeps us going. I too have the chroinic fatigue and it is worse than all the other. Just keep doing what your heart and body tells you and get to the right doctor by process of elimenation! God bless you in your quest ot find the answers! And, oh, also, with Sjogren’s you see a Rheumatologist, and have to keep regular appointments with a dentist and opthamologist for treatment of the dry eye and tooth decay. I hope some of this may have answered your questions or given you encouragment.

Jul 19, 2011 · Dry Mouth in Ear, Nose & Throat (ENT)

Sorry, Cheryl, just getting back to reply. I hope your doctor can help you. I do not know what your diagnoses are and therefore, I cannot answer your question. I know that having Sjogren’s Syndrome, my body is chronically dry inside out. And I do think there is somehing to what others are saying about drinking water. I do not like water and have a hard time drinking it; but I think we both might need to work on that. What do you think?

Jul 16, 2011 · What do you think of this Mayo Clinic community site? in Ear, Nose & Throat (ENT)

I have just discovered the site and I think it is wonderful. I wish I had known about it before now. Everyone who suffers needs to have access to useful information and help with their issues. Thanks for this site, look forward to using it a lot!

Jul 16, 2011 · Trigeminal neuritis/neuralgia treatment: in Brain & Nervous System

I agree with you wholeheartedly, I have a similar story, however, I have also been dx with Sjogren’s and Fibromyalgia. But I suffered with the trigeminal neiuralgia for years and wish I had all the money I have paid out for it. Also, I had to medically retire at 49. Getting to the right doctor is key to your health and your life quality! I have had shots in my face, around my right eye and every kind of treatment imagineable and more. My pain was helped with Botox shots in my face, eye and trapeziod muscle. It took about 3 times and now my pain is manageable. I wanted to have the surgery I was in such pain, but the MD I was seeing did not believe me and actually scolded me for wanting to have the surgery. You must have a doctor who believes you when you tell them what symptoms you have.

Jul 16, 2011 · Dry Mouth in Ear, Nose & Throat (ENT)

I have Sjogren’e Syndrome of which dry mouth is a main symptom I have used Biotene gum which helps and there are other products OTC by this name, even a mouthwash.