How long has this been going on?

[deniselb]

I was diagnosed in 2011 based on high ANA and high SSA. I've never had dryness except in my nose and just this past year starting in my mouth. But I do have peripheral neuropathy and kidney damage, and yesterday I had autonomic function testing which showed severe blood pressure dysregulation and cognitive impairment. I'm waiting for the results of bloodwork that I think will show whether Sjogren's is the cause or something else. The something else could be Parkinson's so naturally I am freaked.

I'm just sitting here trying to figure out how far back this condition could go. I'm 67 and the symptoms that I'm sure are associated with autoimmunity go back to around 1999: sore joints, fatigue, numb toes, hair falling out in handfuls, elevated creatinine levels. But there are things that go back much further, some all the way back to age 13, that I'm wondering about now too: exercise intolerance, reactive hypoglycemia, icy-cold toes, lack of energy, periods of light-headedness and brain fog. The neurologist did a word retrieval test and said my difficulty was a symptom of my condition, but I've had trouble retrieving words for 40 years.

Is it possible that this started 50 years ago? 30 years ago? Could it have progressed that slowly? Any thoughts about this?
Thanks.

[Jasper]

I think that many of us have had Sjogren's Disease much longer than we have had the actual diagnosis of Sjogren's Disease.

Many of our symptoms are vague and, even if we discuss them with our doctors, they are frequently ignored, brushed off, or attributed to other causes by these doctors.

By the time we finally get a diagnosis, we can look back and realize that all of those symptoms we were having for years/decades, were actually due to Sjogren's Disease and were not due to neurosis, depression, hormones, premenstrual symptoms, peri-menopausal symptoms, post-menopausal symptoms, aging, being overweight, and numerous other garbage can "diagnoses" that we have been given.

I was diagnosed only 3 years ago, but I have had Sjogren's Disease for decades. I have had mouth dryness for decades. I had systemic vasculitis in 1993-94 which I now know was caused by Sjogren's. I have had joint pain for 17-20 years and fatigue for over 23 years. My eyes have been very noticeably dry and irritated for 8 years. I have had peripheral neuropathy for 10 years. I have had allergies and sinus problems for almost 40 years. So, clearly, Sjogren's has been causing damage for a very long time.

So, to respond to your questions, yes, I think it is quite possible your Sjogren's Disease could have started decades ago and it could have progressed slowly.

[Joe S.]

I can track some symptoms back to age 11 which would be 52 years ago.

[MAT51]

Me too. I can track symptoms back to when I was about nine and all my hair fell out. My eczema used to form butterfly shapes over my face and my eyes were always dry to the point of needing ointment even at that age. Many symptoms have come along in cycles and have ebbed and flowed with hormonal changes as I've aged. I had periodic constipation, vaginal dryness, allergies, rhinitis, dizziness/ vertigo throughout my 30s and 40s.I was diagnosed with RA once my menopause was completing, but MTX and Plaquenil saw the synovitis off after a few years. Then the small fibre neuropathy took over all my peripheries and then joined in on my face as well and this finally led to finding an ANA 1:320 nucleolar pattern with negative ENA, raised IgG and IgA in June this year.

My inflammatory markers were always between high and very high. The new rheumy ordered a lip biopsy and jackpot for SJS! 

However I only have fairly dry eyes and my saliva production is fine - but I have a very dry oesophagus I believe and periodically my nose gets very dry and bleeds. My eyes were worse a few years ago and worse still when I was young. I presently use Lacrilube nightly and drops two or three times daily on average. Perfectly manageable compared to the neuropathy, dizziness, bad taste, swallowing trouble and fatigue. Not classic SJS according to text book definition.

If my ANA and thyroid levels had been checked when I was little I bet they would have told my story over and over again. I think it could turn out to be a myth that Sjogren's most commonly occurs between ages 40-60.  This may be when it's diagnosed but I bet anything that many of us have it for much, much longer.

[Gorn]

I'm sure I am some kind of crazy outlier.  I first noticed symptoms only 2 or 3 years ago.  (Fatigue, joint pain.) Finally saw a doctor when I was experiencing kidney pain. 

I have a good family doc, and my wife is also a physician, so I'm counting myself lucky to get a relatively swift diagnosis.

("Lucky" heh ...)

[tiredndryinTN]

I can directly trace all this back to a terrible case of mononucleosis in college. There was me "before mono" and me "after mono." Completely different person. Always tired, developed IBS-C, no energy, slept 10 hrs and woke up still tired, contracted athlete's foot and couldn't get rid of it (17 years later I still have toenail fungus on all toes on that foot that won't leave), and I  immediately gained 60lb over 5 months. Later, within the last 2 years came the slow increase of fatigue which already was very annoying to begin with, the beginning of dry mouth and dry sinuses, dizziness when standing quickly from a crouch (which is annoying when picking up after the kids), and Reynaud's phenomenon. And in Nov of last year, the dry eye started and within 2 months went critical.

[cccourt1942]

I can trace a single incident the summer I was 35.  I am 74.  I have had cold hands and feet since birth.  I have a sibling and several cousins who can vouch for this.  I have never been diagnosed with Raynaud's as I don't have the discolorations.  I suffer miserably with the cold extremities year round. 

I was dxed at 71.  My diagnosing rheumy stated since I was treated for 5 years with sialadenitis, he would feel safe going back that far to determine SjS onset.  He says there is no way to absolutely say when onset is.  I can agree with that.  BUT...after reading 1000s of discussions here, there are too many anecdotal accounts which are similar, and with similar symptoms, only to be dxed anywhere from 30 and 40 ...up to my age at dx. There are some who go back to childhood.  I heard a GI specialist in SjS yesterday (lecture) and she is the first medical doctor who stated she has learned as much about gastric disturbances and gastric symptoms thru anecdotal accounts than what she learned in medical school.  YEA!!  How wonderful we have physicians who listen. 

c3