Sjogren's positive, but no Sjogren's?!

[tamtam]

Hi, since I'm new here (but have been reading for a while), I want to wish everyone a happy and healthier new year.

With that, I'm feeling a bit lost at the moment. Long story short, 5 years ago I was on a medication and it set off a whole slew of adverse effects on my body. As far as blood work went, the only thing I tested positive for was ANA, 2X, then nothing.

Fast forward to 6 months ago, I tested positive only for SS-A antibodies , apprx 2.5X the high range. The neurologist sent me to a rheumatologist, who retested the whole shebang, and again, same SS-A antibodies range. However, he says I don't have Sjogren's, says titer not high enough and insisting that none of his patients have what I have (headaches, myalgias/muscle weakness, peripheral neuropathy, MGD, night/morning mouth dryness, chemical sensitivity). I even told him I started getting sexual dysfunction/vaginal dryness 7 years before menopause--documented, but still says no. I told him on the forums there are patients with some symptoms like me and, well, I won't get into what he said because it was very derogatory toward forums and it's members (I will not be seeing him again).

I'm just so frustrated that after 5 years the only thing I can get is a diagnosis of fibromyalgia (based on NO definitive test). So sorry if this sounds like a rant, just would like to see if anyone has ideas of what I can do? I'm just afraid I will get a second rheummy opinion and the next one will say the same thing.

Thanks in advance,

[Joe S.]

Fibromyalgia was the first Dx that I got. I dealt with that for many years. I did not think my dryness was an issue as I had it since I was 5. I thought may be it was related to dry winters and some dry summers. I was able to find remission for my Fibromyalgia and then one day when loading my mini van from work. I developed ad moth rash across my face. Thinking it was just my luck to get Lupus I went in to see a rheumy. After months of tests and finding I was allergic to the normal drugs for treatment, a neuro told me I was referred to him for my Sjogren's. No definite Dx. So, I went to a Sjogren's specialist and was Dx'd on symptoms as Sjogren's

Good luck on your journey to management.

[vrystaat]

I'm glad that you are not seeing him again. I think he's wrong.
Your best option is to try & get enrolled in a University program such as Stanford, Johns Hopkins, Penn and The Cleveland Clinic.
Your course is very similar in what I went through 10 years ago at a California University.

Best wishes

[irish]

If you get a chance I would find another doctor. You might even find an internist who will listen and then give you a new referral. An Immunologist is really the best option if you can find one. They specialist in allergies, immunodeficiencies and last but not least autoimmune diseases. I wish you luck. I would not waste your time with this present doctor as he has proven his ignorance. It is beyond me why these docs don't get proper education in autoimmune diseases. They should be getting info at continuing ed classes. Good luck. Irish

[Kathy57]

Tamtam,

I agree with everyone that you need to get another doctor.  I?m so glad that you made the decision not to see this Rheumatologist again.  I think most of us have gone through a lot of nonsense just trying to get a diagnoses and treatment. 

Is there a local Sjogrens group in your area?  Perhaps they could give you a recommendation based on their experiences.  I feel for you!  I had too many doctors tell me that all my symptoms were in my head.  It was so frustrating! 

Do you have someone who can go with you to advocate for you in the future?  It helped me to have my husband or my adult daughter to go with me for new appointments.  You need support and validation.

Don?t give up!  You will find the right practitioner - hopefully sooner rather than later.

Welcome to the group.

Kathy

[irish]

I did want to remind you that many people with autoimmune and without autoimmune have fiubromyalgia. They are diagnosing more and more cases and have found more symptoms that are associated with this disease. So, keep it ini mind that you may have it also. Good luck with finding a doctor.

Also, do not despair if you don't sow up with positive blood work at this time. It took me 30 years to show up with positive blood work and then even a lip biopsy was positive plus many other issues that developed over the years. I doctored a lot fore years with no real diagnosis...but they did tell me it was all in my head. Patience and perseverance are good character traits to have with autoimmune diseases. Thankfully, most of us have them. Irish