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Sleepwalk 02-20-2012 03:07 PM

Finding a Sjogren's Specialist
[B]Can anyone suggest a fairly simple way to locate a doctor/specialist/clinic in OKLAHOMA who works with Sjogren's Syndrome? I went to a rheumatologist in a city nearby and he gave me meds even after a ANA test came back negative.

I'd like someone more forthcoming and not just someone who wants to treat me for something I might not even have.

I do have something but would like to know what before treatment is begun. I have about all the symptoms of Sjogren's but my mouth is not dry all the time - just sometimes in the very early morning or middle of the night.

If anyone should know anything to help me find a good doctor or clinic, please reply. My husband and I have searched for weeks now.


lifecyclist 02-23-2012 06:08 PM

Re: Finding a Sjogren's Specialist
One of the problems with Sjogren's and autoimmunity is that blood tests may come back negative. Even if your ANA was positive, it would only rule in several possibilities. You need to find a rheumatologist to give you more specific blood tests including SSA/SSB, which is more specific to Sjogren's, and possibly others if you have symptoms that might suggest other autoimmunity.

I sympathize with your plight. I've seen a number of doctors and specialists over the past year who've suggested other possibilities but Sjogren's fits most closely. My blood work comes up negative despite symptoms and family members with autoimmunity. Unfortunately, autoimmunity like Sjogren's can mean learning to manage symptoms despite no firm diagnosis. You will need an ophthalmologist to help/monitor dry eyes, good regular dental care (make your dentist aware of dry mouth--he/she should have suggestions to help with that and can give prescription for high fluoride toothpaste), and you may require a dermatologist, gastroenterologist, etc., to address other issues.

I know this probably wasn't helpful to your specific question. There are websites that rate doctors you can search by specialty and city to give you some other feedback. You might look for an arthritis support group to get recommendations as many with RA also have Sjogren's. I do think it's worth seeing another rheumy if you weren't happy with the first one. Good luck.

Sleepwalk 02-24-2012 08:26 AM

Re: Finding a Sjogren's Specialist
Thanks for replying. I did get invited to an immune disorder support group in my own town and hubby and I both attended. It was helpful and informative.

My eye doctor's receptionist actually has lupus, Sjogren's and fibromyalgia an sees a doctor that she really thinks is good. Several others at the meeting also see the same doctor and he is a rheumatologist with a specialty.

Again, thank you for replying.

boobootwo 03-08-2012 08:32 AM

Re: Finding a Sjogren's Specialist
just wanted to add that an internist also specializes in autoimmune disorders and mine knows more than my rheumy did. just thought i would add another option.

Sleepwalk 03-08-2012 08:35 AM

Re: Finding a Sjogren's Specialist
We have actually located a very highly recommended Sjogren's specialist in Texas and I have an appointment with him on April 3. The best internist in my hometown told me to just accept the fact that I'd probably never feel good again. I didn't go back. . .


chame 03-10-2012 09:12 PM

Re: Finding a Sjogren's Specialist
These replies are all pretty right-on. You need to find a good rheumatologist. The only true test for Sjogrens is a Salivary Gland Biopsy (it's a 4mm x 4mm square from the inside of your lower lip and it hurts a lot!). If it comes back with a lot of lymphocytes, then it's positive. They may refer to it as "Sicca Syndrome" which applies to the dryness, but even a sample with a few lymphocytes will become Sjogrens. That's why it usually takes 6 years for diagnosis :(

boobootwo 03-10-2012 09:40 PM

Re: Finding a Sjogren's Specialist
hi sleepwalk. my mouth is not always dry either...except at work when the only time i can drink is on my break, although my doctor said he would give me a note to allow me to suck on candy or chew gum. it started with my eyes mostly and then the aches and pains and so on. i tend to eat a few chocolate popsicles in the evenings and always take a small glass of milk before i go to bed. i find slimy drinks help with the dryness that i do have, although i have to make sure i see my dentist twice a year due to cavities. anyway....i wish you all the best and i truly hope that everything works out for you.

Sleepwalk 03-11-2012 09:08 AM

Re: Finding a Sjogren's Specialist
Thank you. I have an appointment with a prominent rheumatologist in Texas and will see him on April 3. I'll try to remember I posted here and report back.

chame 03-11-2012 10:01 AM

Re: Finding a Sjogren's Specialist
Ask your doctor for some Evoxac which should get rid of the dryness. If you prefer not to take Evoxac (I do, I haven't had any side effects that I know of), ask your doctor for "Numoisyn". It's just a tart little tablet that encourages the production of saliva due to it's tart flavor. It's not at all bad tasting, you just suck on it until it's gone. My scrip says four times daily as needed but I take Evoxac so I don't take the Numoisyn anymore. When I did take it, before I got Evoxac, it did help but only as long as I sucked on it. Hope this helps.

chame 03-11-2012 10:04 AM

Re: Finding a Sjogren's Specialist
Where in TX? I might be able to recommend someone if the prominent rheumatologist isn't helpful. I've actually found the more *prominent* they are, the less time they have for their patient and have very little information about Sjogrens. I'm in the Austin Area. :)

Sleepwalk 03-11-2012 01:46 PM

Re: Finding a Sjogren's Specialist
My good friend's daughter has Addison's and Sjogren's and she was diagnosed and treated by the doctor I'm going to until her husband was transferred and they moved out of state. She had been undiagnosed since she was a young teenager until she saw this doc. She is also diabetic and has Fibro as well.

My insurance would not pay for Evoxac so I'm taking Salagen until I see the new doctor. It's been a roller coaster so far but I'm hanging in there.

BTW, if I haven't mentioned it I'm in Oklahoma...

chame 03-11-2012 03:05 PM

Re: Finding a Sjogren's Specialist
I have had some of the worst ins in the world and they pay for evoxac. I've had AI's since I was a teen but I doubt Sjogrens for that long. I had CFS and EBV, fibro, etc. The Hashimoto's came before the Sjogrens. It only takes one good trauma to start the circle of horror that are auto-immune disorders

Sleepwalk 03-11-2012 03:25 PM

Re: Finding a Sjogren's Specialist
I imagine you're much younger than I am since most everyone is. :) I just retired in July and my insurance changed. My company insurance paid for most everything. I'm also not seeing the doctor any longer who prescribed Salagen for me. I have heard that Evoxac goes generic in December of this year. If the new doc in Texas prescribes Evoxac we'll certainly pay for it but not until that time. I think Salagen helps a little but so many things upset my stomach that I'm only taking half of the dosage. I can't really settle down much till I know for sure what I've got. The doc here in Oklahoma was so willing just to give me meds even when the initial blood work came back negative. That didn't make me too happy. I'd much rather be fishing . . .

chame 03-11-2012 06:51 PM

Re: Finding a Sjogren's Specialist
Bet you're not :) I'm 52 I've been sick with AIs since about age 16 when panic attacks started.

Sleepwalk 03-11-2012 09:46 PM

Re: Finding a Sjogren's Specialist
The panic attacks began with me when I couldn't breathe following nose and sinus surgery about 3 years ago. I've always had many of AI symptoms but didn't know that's what they were. Hindsight is 20/20 and I know now that the panic was from either Sjogren's or something related. Just waiting on the appointment in April. . . .

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