Do you remember when you first became ill from Sjogren's?

[Sjenny]

Dear Steve:

Thanks so much for doing these You-tube videos!  This will help so many people in raising awareness about our condition.

Sue

[Sandra]

I knew something wasn't right in 1999. I had been diagnosed hypothyroid in 1980 and in 1989 diagnosed with Addison's disease, I was 18 and 27. Life changed a bit with the Addison's dx but for the most part i did "resaonably well" to steel Julia's catch phrase . But about 1999 I knew "something is just not right" my phrase to several dr's. It seemed to cycle or flare around that time of the month. I was referred to a reproductive endocronologist in Ottawa, Dr Elaine Jolly about 2001-2002. The first interview with her and her intern introduced a suspition of something called "sjogren's syndrome". I am amazed how quickly she came up with it and that she was able to sort out all kinds of symptoms in my "auto-immune ball of string". I did end up in auto-immune early menopause within the year probably due to the Addison's. It still took several years for the positive dx of sjogren's with a referal to a rhuemy and finally with a lip biopsy in May 2006. Referals take forever here and when dealing with an illness like sjogren's it takes a handful of referals/specialists. Since then I've been trying to learn just what "sjogren's syndrome" is and what's normal whats not and what to seek help for and not and how to live as comfortably as possible with it. That's all hard work too. Thanks to you people it makes things much easier. Thanks, Sandra

[Katybarstool]

Like many of you, I had lots of throat infections and tonsillitis as a child - these also used to trigger seizures until I hit puberty. Then the seizures stopped but the joints started being a problem. I can never remember feeling really healthy, and was always much tireder than my siblings. I have had dry eyes for many years, and lots of allergies. I lost all my teeth by the age of 21. However, things never really escalated beyong that until I developed lung problems about 5 years ago. My hysterectomy almost 3 years ago seems to lead to a downward spiral and then my eventual diagnosis last year.

Kathyx

[Rania]

My Sjogrens came along very sneaky and silent. I've had it for years, maybe even since early teens, but I remember I suddenly got trouble with my contacts in 1999. In 2000 I stopped wearing them. My mouth has been dry since the teens.
I was diagnosed in 2001.

Rania

[wen.uk]

I can remember the period of time, but not the exact date.  Iwas dxd with colitis in 1996 after a long spell of ill health.  I recovered well on medication and apart from the odd flare up was fine.  Years later in 2005 I spent months going to and from the doctor as I was feeling so unwell again, only to be told I had a virus, depression etc, or another flare of colitis.  This was the start of the SS. 

It was so annoying not to be taken seriously at the time, and was only due to an ENT consultant who was on the ball and referred me to an excellent rheumy that I got a dx 12 months ago. 

Think we all remember it as a life changing experience, and for most of us it's not a change for the better.  But hey - here's to our good days, and I pray there are still plenty left for all of us.

[Skylar]

I'm so glad so many people are responding to my question, I find it interesting whether we can pinpoint the start or not. Seems most people see it more as a progression.

Steve, I think it's wonderful you made another UTube video - so many people don't get diagnosed properly at first - it seems SjS is just not considered a possibility.

Skylar

[Epson]

Yeah, it all sounds familiar, when I was young it was growing pains and when I hit 40, it was old age!

My foot doctor sent me to a rheumatologist when he felt all the bones popping in my feet.  Apparently popping bones and ANA of 1280 is bad.  Well, I guess it wasn't all in my head like some of the doctors were saying.

Billydude,

That was a good tape.  I forgot about a lot of the symptoms that you brought up, infact I think I will watch it again.  The phallus behind you kept distracting me.

[Marymum23]

I remember well the exact day I began to suffer big problems---one day in the Fall of 1999---joint pain, fatigue, fevers, dizzy, terrible body pain--It lasted 14 months and at that time I never got a good diagnosis other than "chronic fatigue".   Although I do advocate for vaccinations and I am almost reluctant to share this, my symptoms started within 24 hours of getting a flu shot.  I felt so ill I actually had to leave work.  My legs just would not work.   My food started sticking on its way down.  I did have to stop wearing contacts during this time due to dry eyes.  I altered my diet and lifestyle and pursued "naturopathic" remedies.  I had a few exacerbations of symptoms and even had two positive labs for SSA and SSB, but was dismissed by doctors as a head case.  I also developed adult onset asthma in 2003 and my rheumy thinks the breathing problems might be related to SS.  I finally found a doctor I could trust and help me last October.  By then my mouth was also extremely dry.  I guess for me the eye and mouth symptoms have always been the least of my problems since the joint pain and fatigue and brain fog when I am sickest are so incredibly disabling. 

I like others I have seen had lots of strep throats, sinus infections, allergies, growing pains and incredibly bad menstrual dysfunction and endrometreosis, migraines starting at age 19, and was in terrible pain in my arms and hands from about age 14 on.  Both of my parents were very ill (lung cancer,diabetes, heart disease, Alzheimers) when I was a teen and I really felt I could not complain.  Now I just allow myself to be ill and down when I need to...versus years of denial.

thanks for asking,
Mary in Los Angeles