Hello Everyone,
Wanted to get people's opinion on Sjogren's presentation.
My original post was here: https://sjogrensworld.org/index.php?topic=29490.msg310710#msg310710
I was surprised to see that a lot of people on the forums thought that I may have Sjogren's and was rather depressed to hear that.
A quick summary:
I am a 21 YO Male with no other health problems but a family history of autoimmune thyroiditis and vitiligo.
1. Had severe dry mouth for 12 days in December and chapped lips.
2. This was replaced with jaw pain at the TMJ for 3 weeks.
3. Everything went away in January and I had no symptoms for 3 months.
4. The dry mouth came back (though not as severe as in December) and has stayed more or less the same for the past 3 months. Some days or worse than others but it is chronic - no days off.
So I saw the Rheumatologist a few weeks back. The first appointment, he stated that I do not appear to have Sjogren's but that he may have to eat his words.
He did a full examination and listened to my symptoms and ordered more bloodwork:
Bloodwork indicates normal ranges for HBA1C, HEP A/B/C ABs, Sed Rate, CRP, Quantiferon-TB, RF (7 IU/mL), CCP AB, ANA, DS DNA AB, SS-A/SS-B, SM & SM/RNP AB, SCL-70, and with no monoclonal proteins detected in urine or serum via immunofixation. Latest bloodwork did reveal mildly elevated ASL/AST and RBC count that I will have evaluated this week.
Rhuematologist was quite convinced that I do not have Sjogren's based on my presentation, age/gender, and bloodwork.
Some notable differences from what I've been seeing about Sjogren's:
- Sjogren's much more commonly affects white females (I'm a southeast asian male) in the 4th/5th decade (I'm 21).
- Sjogren's patients typically have dry eyes for years before they develop other symptoms. I did not report dry eye symptoms.
- Almost no Sjogren's patients I've seen on the forums have had a complete disappearance of symptoms after severe conditions, but I did for three months.
- Most Sjogren's patients have at least some kind of abnormality in their bloodwork. Mine was completely standard except for mildly elevated liver enzymes on the last bloodtest.
Next step:
I am to see a dermatologist to check about the Oral Lichen Planus my ENT supposedly saw.
I am to also see an endocrinologist.
What could it be?:
It seems idiotic for me to suspect that I have Sjogren's when I have now had 3 physicians (An ENT, Rheumatologist, and Family Physician) tell me from their years of experience and studying that I do not have this condition.... especially when the textbook presentations are off and so on.
So what else could it be?
Is there anything local that could be causing this --- neuropathies for example? Something related to my impacted wisdom teeth?
My internist suggests it is possible that this could also be an undifferentiated connective tissue disorder.
What about remission?
We are not doctors and therefore are reluctant to give an ?opinion?. You can always try the Biotine products that are helpful for symptoms of dry mouth. If you do have dry mouth it is important to be extra careful with keeping your teeth clean to defer cavities. That is the most impactful outcome of chronic dry mouth. So BRUSH after every meal and floss....and investigate products for dry mouth.
Good luck.
Hi, I'm not a doctor, but here are my 2 cents on your situation.
These conditions are not easily diagnosed, but the more testing you do
the more ruling out you can do and the closer you may come to an actual diagnosis.
1- Have you had your thyroid thoroughly checked out? With your symptoms and family history it's the first thing I would look into.
2- You can do a sialoCT, MRI or other imaging and if all fails even an endoscopy on your salivary glands to find out exactly what's going on there: A blockage, inflammation, possibly an infection....
It may be a local problem of the salivary glands. Infection or inflammation from any source would also explain the TMJ pain. It's worth focusing your efforts on investigating this area since it's causing the most symptoms.
3- Though you do not feel your eyes are dry, it could be you've gotten used to it.
I didn't realize mine were actual dry, and neither did any eye doc I went to, until I had a Shirmer's test done and it showed 0mm in both eyes! It's a short and simple test and it will give you some definite answers regarding the dryness of your eyes. If you reach no other conclusions in your search, it's worth a shot.
4- Yes, an endocrinologist is a good idea. He might further investigate the thyroid issue as well as hormonal imbalances such as testosterone levels which may contribute to your symptoms.
Do keep us posted on your findings!
If dry mouth remains your only symptom we can help you find relief for that,
but it's important to figure out what's causing it so treatment doesn't remain symptomatic
and to prevent other possible developments and complications from an underlying medical disorder.
Best of luck,
Sharon
Sjogrens is a diagnosis by elimination. On average it takes about 7 years. Relax and work with your doctors. While you are going through this process, pray that it is something else that can be treated and cured.
Doctors are more in the business of treating symptoms than diseases now a days. I blame the insurance agencies for this change. They control what the doctors can prescribe and what treatments they will pay for. I believe that no one should be forced into bankruptcy for health care. There are less expensive treatments that are not on the approved list that may be more effectve than those on the list. The often come from other countries.
Before trying anything check for interaction, counter indications and side effects.