Am I the youngest person here with Sjogren's ??????

[sbw32wooten]

I'm 22 years old... I've recently been diagnosed with sjogrens... I'm feeling pretty lost on how to cope. And it's been extremely difficult trying to finish out this last semester of college... I'll be graduating in December... hopefully

[gurs]

My SS probably started at birth. I was finally diagnosed in my teen's, and finding a good rheumy is the most important thing.
I started plaquenil and for many, many, years, it was manageable pretty much. I had a normal life. It really wasn't until I had a hysterectomy and then my hormones went crazy causing me to be in constant flare.

Don't worry about your age etc. There are a lot of people who's symptoms that aren't as severe either. I would highly recommend
getting on plaquenil and just staying on it. It will help prevent future damage in my opinion.

good luck..don't fret!!

Gursie

[Nymph]

Hang in there! It sucks to get through school with this. You can do it, though. I am there, too. Pace yourself and just say no to everything but the bare necessities. Thankfully you're almost done! Tell your doctor that you're struggling to make it through the semester and ask for help. Plaquenil helps lots of people but it may not kick in fast enough to help with this semester. Good luck!

[Xina]

I was 28 when symptoms started, started losing teeth about 5 years later, had my entire pup teeth removed at age 39. I am now 41. I was diagnosed just after my 40th birthday, yay me. But I had been seeking dr care since 2002 ( age 29) when the joint pain started. I didn't have Drs that really took time and listened then.
It can really depend on the person how fast it progresses. Everyone is so different. I'm sorry you are young and getting diagnosed but, now you can get treatment.

[Xina]

That's *upper not pup. Typing too fast on my phone. Lol

[Scottietottie]

Hi sbw32wooten 

Welcome to Sjogren's world. I think the youngest sjoggie we had in here, who posted, was 9. We also had the mother of a 4 year old.  It seems that it can strike at any age although later is more common.

I'm sorry that you have it but you've come to the right place. People in here are friendly and supportive and knowledgeable.

Take care - Scottie 

[poisonangel168]

I just wanted to tell you that you're certainly not alone. I was diagnosed at 24, and I just turned 27. I was ill and seeking a diagnosis for many years prior to that. I also have severe symptoms, unfortunately. I will receive my first infusion of Rituxan this month.

[gurs]

Newbie..so sorry. Doc thinks I was actually born with this. When I was born, I had pneumonia, after that, my mom said I slept all the time? I remember in grade school/middle/high school that I constantly had my head on my desk and was just super fatigued. I really struggled. I also had stomach issues like gastroparesis way back then. After puberty, things got really bad with the dryness etc and then the cavities..was referred to a rheumy who diagnosed me with Sjogrens. All my female cousins on one side of family have some form of autoimmune. I believe we have this faulty gene, and then it gets trigged by something. A hysterectomy 8 years ago really did me in. It made me 100% worse. Hormone balance is a biggie.

I hope the rituxan works great for you..what type of symptoms are you having?

hang in there

Gursie

[Carolina]

I think there are two different modalities here: 

1.  There is a specific diagnosable autoimmune condition that is Sjogren's Syndrome, which involves both physical symptoms and specific blood markers and other physical tests.

2.  There is what I call a generalized immune disorder which involves a host of illnesses, fatigue, depression, pain, and for many of us started at birth, or infancy, early childhood, or any other part of our lives. 

Some of us have both.  And Sjogren's can be the start of a more generalized immune disorder, which brings in additional autoimmune conditions as well as Immune Deficiency, and the host of co-conditions (anemia, Raynaud's, etc).

What amazes me is that when a study was done of a large group of elderly Japanese patients with peripheral neuropathy HALF OF THEM were found to have undiagnosed Sjogren's.   They had the blood markers for Sjogren's, but had never complained enough, nor been tested before.  That astounds me.   Clearly the testing for Sjogren's is not done often enough.

All of these things are part of basic immune mediated disorders which arise from a misfunctioning/malfunctioning of our immune system.

Hugs,  Elaine

[Scottietottie]

@ Patze - I think Jenna's Mom went and founded a Facebook Sjogren's page. 

[happylife]

I have been crazy since last 6 months. Because i have developed the following symptoms gradually.

dry eyes (which progressed from normal 14/15 to severe 5/15 in a matter of 5 months)
dry mouth (has progressed from normal to dry mouth at night.....and mild dryness around lips during day time)
dry nasal passage
fatigue (for about 30% of my days during first 3 months)
one small gumboil just 1mm in size has neither increased not decreased in last 6 months.

All blood tests normal (SSA,SSB,ANA,ESR,CRP etc) only vit-d and vit-b12 were low.

Every doctor i have met (opthalmologist, dentist, rhumetologist) all say that i do not have sjogrens, but cannot explain why have i developed all these symptoms in a span of just 2 months after 40 years of healthy life. None of them have given me an alternate theory of what disease am i having, which can cause these many symptoms.

I think that most of the sjogren patients actually have the disease onset about 5 to 10 years before any major symptoms shows up....because  most of the medical books say that this is "very slow progressing disease"

so if a patient has atleast 3 of these 5 symptoms dry-eyes/dry-mouth/dry-nose/fatigue/insomnia should assume they are sjogren-suspect, and they must closely monitor the newly emerging symptoms if they fit in the huge laundry list of sjogren symptoms.

I think the current blood tests and other investigations have poor specificity and poor sensitivity to rule-in or rule-out sjogrens. So as custodians of our only body that we have, we must stay paranoid and become highly observant of our body.

[Sweetcheex76]

You're probably not the youngest person here I'm envious you got your diagnosis in your twenties. I've had this disease my whole life. My mom took me took the doctor when I was a baby because of my tear production. Around 5 yrs old, I was having issues with the sun. I had crumbling teeth since my permanent ones came in. I wasn't diagnosed with Sjogren's until my early 50's. I got some bad news from my neurologist yesterday and this morning I broke down to my husband saying, "I know I always say this but why didn't any doctor catch this sooner? If they did, the progression coils have been slowed and I wouldn't be in such terrible condition". The earlier your diagnosis the better. ?

[SjoDry]

Do remember my fellow "young sjoggies", there is an under 40's SS group run by my friend Paula.

If you would like to connect with her, she can be reached below. It is not just for NY. She does a neat SKYPE type meeting periodically and they get together at SS Patient conference each year.
For the rest of us..well we know we are 20 in our head it's just that our bodies don't agree. 

New York City Area "20s & 30s" with Sjögren's

Support Group Leader:
Paula Sosin
Contact Information:
(301) 538-3422

Cheers!
SjoDry

[cccourt1942]

SBW posted her query "am I the youngest" years ago.  Never joined or posted again under that name.  But the panic in her post triggered the memory of my first few days after dx.  I was not expecting a dx, I didn't WANT a dx, and I certainly never dreamed a dx for a condition I would never have heard of.  I never dreamed any impact of a disease could hit me as hard as that SjS dx.  I recall sitting in my house...no TV, no lights, no music, didn't answer the phone...for three days.  When I snapped out of it, I thought "how long have I been here, when did I eat last?"  I was suffering burning tongue/mouth so I would so for days without eating as everything hurt my mouth.  I was still working contract work, but it was Christmas holidays. 

When I realized it had only been three days, I started to laugh.  But  the feelings she expressed, I remember vividly.  I'm close to 4 years since dx, and really, the aggravations of "one more condition" have just now ceased my just stopping in my tracks and not screaming. 
c3

[MAT51]

Hi. I too have had symptoms of Sjögren's and hypothyroidism for much of my life. I had loads of dental problems as a child, dry eyes as far back as I can recall and total alopecia age 9-11 and again post gestationally after having each of my kids. My youngest was born with a butterfly rash across his face which no one could explain. I'm seronegative, was previously misdiagnosed with RA and later thought to have MS by several doctors. Last year, with +ANA and high IgA and IgG and always high fluctuating Sed rate and CRP - I had a lip biopsy which showed 100% positive. It does get to me a lot as a disease just now and I'm on the highest dose of Cellcept for it. But as others have said to you - I think Sjögren's is the least understood rheumatic disease and I come across many young people on autoimmune forums, including young men, who can't get doctors to take their possible Sjögren's symptoms seriously merely because of their age. So I believe the age and gender info given out could well be very misleading. I know I've had autoimmunity for most of my life. It hasn't stopped me from living my life very well and productively until quite recently though.