Sjogren's patient history

Hi Mike T,

What I have found....

[quote:12e1a01a6d]Sjögren’s syndrome is a chronic autoimmune disease in which a person’s white blood cells attack his or her moisture-producing glands.

What causes it?

It's believed that the condition develops as a result of both genetic and environmental factors. Those who develop Sjogren's appear to have specific genes making them susceptible, but the gene alone doesn't make Sjogren's a certainty - something must trigger it. This trigger is most likely to be a bacterial or viral infection.

The gene for Sjogren's syndrome causes these fighter cells to attack healthy parts of the body

The infection promotes a normal response from the immune system, which launches an attack against the infection with fighter cells. However, the gene for Sjogren's syndrome causes these fighter cells to attack healthy parts of the body, such as the glands of the mouth and eyes. Moreover, the gene keeps the fighter cells alive so they cause further damage.

What's the treatment?

It's not possible to prevent Sjogren's syndrome and there's no cure, bur treatments can help to relieve many of the symptoms. Treatment varies depending on which parts of the body are affected.

Treatment may include:

* Artificial tears to help with dry eyes

* Saliva stimulants and mouth lubricants for dry mouth

* Anti-inflammatory medication for joint or muscle pain

* Corticosteroids or immunosuppressive drugs for lung, kidney, blood vessel or nervous system problems[/quote:12e1a01a6d]

This apparently can take up to 7 years to diagnose??

I hope this is some help to you?

Regards

SES x

It took me 10 years to get a diagnosis due to the majority of consultants that I was referred to not being aware of SS let alone how to treat it. Easiest test is the Schirmer's test then when they have done that they start taking you seriously.Good way to get information is to get a copy of the Sjogrens Syndrome Handbook, it answers all your questions about this rotten disease. You don't feel better when you have read it but it gives you a good insight and makes things much clearer not to mention re-assures you that it is not all in your imagination as most GP's would have you believe.

Hi

I live in Australia now and agree that Gp's don't Know or give you any information concerning this, other than about dry eyes or mouth. I was lucky and was diagnosed within days of having a very sore tongue. This was done through a blood test, however my doctor suspected that I had Sjogren's so maybe there was a specific test for it..

I will certainly look out for the handbook.

I was diagnosed by blood test. It was funny because I had been diagnosed with chronic dry eyes years before my sjogrens diagnosis. I also lived on over the counter anti-inflammatory medication because I was always achy. I was diagnosed at 30, and had symptoms though out my adult life.

Now to address the original poster.. yes I have had crying episodes. Unexplained anxiety and depression (since diagnosis) When this occurs I typically take as many anti-inflammatory supplements that I can find and get some rest. That normally does the trick temporarily at least-- the episodes are pretty common.

None of the other stuff applies to me though. Sjogrens is an autoimmune condition, and understanding what causes those is extremely hard. Good luck looking for a connection.

Mike T I found your post very interesting. I have just been diagnosed with Sjorgens after a year of constant trips to my doctors and later being referred to a Rheumatologist who firstly diagnosed polymyalgia then my own doctor diagnosed fibromyalgia and after a test on my dry eyes my Rheumatologist has concluded I do have SS but going back to your post I did go through a period of extreme stress and anxiety which lasted for some considerable time (years in fact) which caused lots of sleepless nights and crying. Also I am not sure if this has any relevance but two years ago (before my symptoms started) I contracted a virus while on holiday and I was extremely sick and lost lots of weight the doctors said I may have picked up the Norovirus or some other type of bacteria. It took my a long time to recover. Is it a coincidence I am not sure but I never fully recovered from the virus and now have indigestion problems, chronic fatigue, flu like symptoms as my joints and body aches as well as the dry eyes and mouth to name but a few symptoms.

It is good to find a forum which people who understand that these symptoms are not just in our heads but we are experiencing them everyday, Good luck.

You bring up an interesting point.. I have always wondered if viruses can trigger autoimmune conditions. I also had few serious viral infections prior to my sjogren symptoms. I wonder if there is a connection!

Rose 77485, I am sure that somewhere, in some site's Sjogren's information, I read that there are researchers theorizing that a virus or other type of infection might at least trigger Sjogren's (i.e. possibly an individual with a propensity to develop Sjogren's might never actually develop it without this trigger).

I have often wondered about my specific case. I was actually diagnosed fairly quickly (within 6-8 months of seeking help), especially considering that I did not have the classic dry eye/dry mouth symptoms. What I first had was vasculitis in my ankles and calves, eventually climbing up all the way to my torso. I also had extreme "diffuse" hair loss (not patches of baldness, but the kind of all-over hair loss that makes your hairstylist tell you in a shocked voice, "Honey, you have now lost one-third of all your hair! You HAVE to see a doctor!"). Luckily, I had very thick hair and no one else noticed.

I took photos of the vasculitis (I didn't know it was that back then) to show to my GP because I could never time a visit just right so she could see it. It usually faded within 2-3 days. The pictures were key. My GP did some research and then referred me to my current rheumy, who verified Sjogren's based on my bloodwork.

Now, here's the out-of-the-ordinary thing that happened to me just prior to my first Sjogren's symptoms: I broke my tibia while figure skating and eventually had to have surgery with hardware inserted (a titanium rod and five pins). No viral infection that I can think of, but a wound like that and all the attendant risks of major surgery in hospital. I wonder how many people had some kind of surgery and/or major medical intervention before "contracting" and/or manifesting Sjogren's?