Do i have sjogren syndrome?

[happylife]

Dear Friends,

Thanks for making this wonderful forum possible.

I am 41 year old male, 60kgs with fairly active lifestyle. I have the following symptoms since last 90 days. Please tell me if this sounds like sjogrens.....may be early days of sjogrens.

NOTE: I had impacted wisdom tooth extraction done both lower-right and upper-right side 3 years back.....it was a one hour surgery, that left me with loss of sensation of my right side of tongue. (i believe that the injections they give for surgery damages the lingual nerve)

1. Since last 90 days : i have a 0.5mm boil in the lower right gum (below the pre molar tooth) for the last 90 days, dentist told me to just ignore !! and he tells me all my teeth and gums are perfect.
2. Since last 75 days : i have dry eyes symptom in my right eye only. (i got the schirmer test done, which showed tear level as 9/15 in right eye, and 14/15 in my left eye. currently eye doctor also thinks this is not sjogrens)
3. Since last 75 days : once every 2 or 3 days i feel feverish, but there is no temperature. sometime this lasts the whole days, sometime for a few hours.
4. Since last 30 days : during night i feel i have dry mouth (i wake up 3 to 4 times in night and find that my tonue is sticking to mouth roof, but during day time i think there is enough saliva.....i dont need to drink water to swallow food)
5. Since last 90 days : Mild pain of my right side face most times of the day(very mild pain....near right side lower jaw front, lower jaw back, near ears, near right temple.....only on right side, not on left side)

My blood test related abnormal/important readings.
1. ESR : 24 mm/hr (normal range for men is 0 to 10)
2. Serum chloride : 118 mEq/L (normal 96 to 106 mEq/L)
3. RA factor : negative
4. CRP test : negative
5. Yet to do the SSA, SSB and ANA......I have an appointment to do this next week as i am currently travelling.

Thanks in advance to all my dear friends....may god bless you all.

QUESTION: Based on my symptoms, what do you think is the probability of me having sjogrens syndrome? high or medium or low?

Thanks.

[Joe S.]

The average it takes most people to get a diagnosis is about 7 years. The Rheumatologist usually gives the diagnosis with information from your dentist, and your eye doctor. You may have to go in like I did for a pulmonary and neurologist consultation. The diagnosis is usually by elimination and that is why it takes so long. There is currently a blood test but I do not personally know how successful it is. I was Dx'd on symptoms (Dry eyes, nose, mouth, skin, and bum) after many years.

I first noticed a moth like rash on my face and thought it may be lupus. Lupus attacks your organs and Sjogren's attacks your glands. Symptoms may very depending on how long you have had the illness. I wish you luck in getting a diagnosis. I hope that you do not have this but if you do that you find treatment sooner rather than later.

[happylife]

Dear Joe,

thanks for your quick response.

when a person is diagnosed with SS what is the minimum critical medication that is given?

anti-inflammatory? pain relief or what?

trying to understand which is super-duper critical medication that has to be taken?

Also when you have "fully dry mouth".....meaning absolutely no saliva at all?
also every person with SS will become completely dry mouth after x number of months/years?

[Joe S.]

Everyones body is different and the disease often progresses at different rates. I had problems with the typical medications (bad side effects) so I am managing with supplements.

Don't panic. When you do the pain is worse.
Breath through the pain. Getting oxygen to your muscles reduces the pain.
Distract yourself from the pain. I watch comedy.

Remember the 3 S's. Sip, Swish, then Swallow water. Since i do not complain a lot to my primary Dr. She looked in my mouth and exclaimed "OMG, is your mouth dry!". Yes, I have Sjogren's.

I supplement with D3, Flaxseed oil, and things to repair damage to gene six and seven of my mitochondria DNA.

[happylife]

Joe, you are a hero

You radiate confidence. I will try to learn the same. thanks.

[cccourt1942]

Won't complicate replies..you have some nice ones.  I will say this to tongue sticking to roof of mouth: the last few years prior to my dx, I didn't have enough saliva for anything to stick anywhere in my oral cavity. 

In the meantime, an OTC product which will make that oral cavity more comfortable is Biotene Oral gel.  Available at Amazon if can't find locally. Also, Xylimelts which are placed along gumline to add moisture to the oral area.  The Xylimelts are available on Amazon as well. 

Good luck.  Remember: doctors can treat your symptoms without a Sjogren's dx.

ccc

[happylife]

Thanks cccourt1942

i am currently brushing after every meal lightly. i am waking up 2-3 in the night to drink a little water.....if this gets worse i will use the medicines that you suggested for dry mouth.

thanks again.

[irish]

I am concerned about the boil in your mouth that the doctor told you to ignore. If it is a boil there is a chance that you could have a low grade infection that could be causing some of your symptoms. I wonder about the low grade fever and the pain.

I am wondering if you should be seeing a oral surgeon and getting an assessment of this. It is always possible to have pressure on a nerve that could affect the production of saliva and the pain.

If it was me I would get this checked out before I forged ahead on the Sjogrens diagnosis. I have had a ton of dental work and infections and had all my teeth pulled. I am a retired RN and know that I worried a lot when I had all those infections because the mouth has such a good blood supply. Oral infections can be very tricky and also pulling teeth can do damage as you well know and this can cause a lot of things to occur. Good luck. Irish

[happylife]

Thanks Irish

What is RN? Sorry for my ignorance

Also have met 1 maxillofacial surgeon and 2 dental surgeons...both have told me to ignore the 0.5mm boil.

I just got my blood tests done yesterday here are the key results

Esr 7
Ra factor 11.6 iu/ml
Ana negative
All ana panel negative ( including ssa ssb are negative)
Crp negative

Can the above be true even if i am in early days of sjogren?

[irish]

A person can have all negative blood work and still have Sjogrens or any of the autoimmune diseases. Sometimes the blood work will convert to positive over the years. Many times the blood work will go back and forth between negative and positive. However, if you are diagnosed with Sjogrens with a positive blood work and it converts or changes to negative you still have the disease.

You have not been having symptoms very long so it is not a surprise to have negative blood work. It took me over 35 years to get diagnosed with my first autoimmune disease and then one year later diagnosed with the Sjogrens in 2003. Then in 2006 diagnosed with 2 more and this past summer one more diagnosed. All of them have been a problem for a long time but it is hard to nail them down to diagnose because of the crazy symptoms. RN stands for Registered nurse.

You had an elevated ESR or sed rate I see. In the US the normal sed rate is usually 0-20 at most places. It is possible that you could have Sjogrens but it will take time for them to figure it out. You might want to do a search on this site using the words treatment dry eyes dry mouth. This might bring up a bunch of posts with information. There are some products to buy over the counter that can help. I suck on sugar free cough drops a lot for many years to help keep moisture in my mouth. People with dry mouths get cavities more easily so the sugar free is the thing to do. Good luck. irish