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Probably Sjögren's Syndrome all along.....

Justin30

Senior Member
Messages
1,065
Hi @Megan17 and others on this thread

I had my Schirmer's yesterday at the eye clinic. The doctor didn't actually bother measuring the result. He just laughed and said 'There you go, you can see there aren't many tears being produced there!' He was quite jovial. The end of the paper was just wet. He said he thought I have Sjogrens, based on eyes and my dry mouth. However I'm not sure he would be the person to diagnose. I'll wait to see what his letter to my GP says. I'm awaiting a rheumatologist referral.

He offered to put in punctual plugs at the appointment yesterday, but I said I'd rather wait and see how I get on with the new drops. It was nice to see a doctor who listened and took my symptoms seriously and on face value (always feels so validating).

I've been thinking back now just how long I've had dry eyes and dry mouth. It's a long time! It probably started when my migraines did, around the age of 30 (I'm 49 now). I keep thinking of the title of this thread 'probably Sjogrens all along'. In my case I've got a thyroid thing going on too, and I am wondering if ME was ever really part of the picture.

My PEM has changed recently too. I seem to get migraines now if I do too much. When I was first ill with ?ME, I definitely has Classic PEM, it was what convinced me I had ME. Maybe I had ME for 3 years as part of the whole thing, that 3 year ME weird one...now it's back to Sjogrens and Hashimotos, possibly.

I've been reading about Sjogrens and the need to exercise and balancing exercise and rest. I know long periods of inactivity don't suit me, but I can't overdo my activity either, again this makes me think I'm Sjogrens and not ME. But maybe I'm Sjogrens and ME and Hashis. As illnesses go, that doesn't seem too bad a list in some ways.

How many people on here might have Sjogrens and not ME, or another, undiagnosed autoimmune disease I wonder? Quite a few seem to have ME along with other auto immune diseases and I wonder why keep the ME diagnosis, but that's for anther thread I think. Complicated...

The ME that is described by Ramsays and Dowsett I believe referred to it as a:

Neurological
Autoimmune
Immunological
Mitochondrial
Musuloskeletal
Pain
Endocrine
Etc.

Disease....the initial hit to the CNS disturbes all bodily systems.....

Thats why I believe the list of comorbidities is extensive.....

Sjorgens has huge overlapp with ME but due to the inability to diagnose quickly or the marker to show up...is a big problem....as like people I know with more severe form of SS have more permanent damage....because of the inability to diagnose and treat in a timely fashion....
 

TrixieStix

Senior Member
Messages
539
Thats why I believe the list of comorbidities is extensive.....

Sjorgens has huge overlapp with ME but due to the inability to diagnose quickly or the marker to show up...is a big problem....as like people I know with more severe form of SS have more permanent damage....because of the inability to diagnose and treat in a timely fashion....

I am going thru this exact thing myself. I've seen 2 rheumatologists over the past 3 years, the last time being 6 months ago and both just dx me with Fibromyalgia, because none of the usual run of the mill autoimmune tests came back positive/elevated (only my rheumatoid factor was slightly elevated). This is ridiculous though given the severity of my symptoms and the profound level of disability I have as a result of them. Also like you said there are a % of people who are seronegative (up to 20% in Sjogren's) so why can't I be one of those people???

Since January I've been under the care of one of the few ME/CFS specialists here in the US and this doctor ran a bunch of blood tests I have never had done before. The results have come back showing me to be deficient in Complement C3 and C4 (hypocomplementemia). The hypocomplementemia could be a red flag for me possibly having an immune complex/autoimmune disease.

"Immune complex deposition is a prominent feature of several autoimmune diseases including vasculitis, systemic lupus erythematosus, cryoglobulinemia, rheumatoid arthritis, scleroderma, and sjogren's syndrome.
( https://en.wikipedia.org/wiki/Immune_complex )

In addition my Natural Killer Cell Function is far below normal range, and impairments of Natural Killer Cell Function (cytotoxicity) is known to have an association with autoimmune diseases also.

"Over the last 30 years, many studies have reported decreased NK cell numbers or impairment of NK cell cytotoxicity in the peripheral blood of patients with autoimmune diseases such as multiple sclerosis (MS), rheumatoid arthritis (RA), systemic lupus erythematosus (SLE), Sjögren's syndrome, and type I diabetes mellitus." ( https://arthritis-research.biomedcentral.com/articles/10.1186/ar4232 )

Given all of this I thought it smart to message the rheumatologist I last saw about these test results, and she agreed that I should return to see her again. My appt is in 2 weeks. A few months ago I developed a new symptom of having a constantly parched feeling mouth which sometimes gets quite severe while sleeping (painful & tongue gets stuck to roof of my mouth) I will be sure to inquire about Sjogren's especially given the high % of people with seronegative SS, and the fact that the blood abnormalities I have can be seen in those with SS.

I just happened across this post about Sjogren's, ME/CFS, diagnosis criteria, etc which I think has good insights. I learned that a salivary gland biopsy can cause permanent nerve damage! Knowing this I don't think I will consent/request one even though my SS-A and SS-B were negative.

http://www.whatyousjo.com/2016/09/s...ity-and-the-cfsmefibromyalgia-dumping-ground/
 

kangaSue

Senior Member
Messages
1,851
Location
Brisbane, Australia
@TrixieStix I see a lip biopsy is often suggested when blood tests are negative. It can take 10 years or more before the antibodies are detectable in bloods though, that is why there is often such a long lag in being diagnosed with SS.
A few months ago I developed a new symptom of having a constantly parched feeling mouth which sometimes gets quite severe while sleeping (painful & tongue gets stuck to roof of my mouth)
You can get this symptom with Sleep Apnea too, do you happen to have that? A dry mouth is also a symptom in Autoimmune Autonomic Ganglionopathy.
 

TrixieStix

Senior Member
Messages
539
Uggh. There is no way I could calmly sit there with paper stuck in my eyes. How can that person tolerate it?
They put numbing drops in your eyes a few minutes before. It keeps your eyes from producing extra tears in reaction to the paper and it also makes it less uncomfortable. I just had my 1st ever schirmer's test done a couple days ago and it was indeed unpleasant but not horrible. It was worth it to find out that indeed my tear production is indeed decreased.

The eye doctor has started me on Restasis (prescription immunsuppressant eye drops) and wants me to see the rheumatologist she refers people to as she also thinks I could possibly have Sjogren's. I was started on oral Pilocarpine 2 months ago for my dry mouth by an ENT and it has improved my eye pain. The last rheumatologist I saw referred me to an ENT to have a lip biopsy done, but I'm hesitant to go thru with it due to the risk of nerve damage.
 
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TrixieStix

Senior Member
Messages
539
@Jonathan Edwards Do you think the "Novel Sjo" test is worth seeking out for those of us who are negative for Ro and La antibodies, but who have symptoms suggestive of Sjogren's? My eye doctor was aware of the test but does not offer it.
 

TrixieStix

Senior Member
Messages
539
Hello all,

I have returned to Phoenix Rising after a five year absence only to find that there are no specified autoimmune forums anymore...but no matter.....so hopefully the Connective Tissue forum will suffice.

Since 2009 I have had the 'Fibromyalgia' label (given by a Rheumatologist), which I have always held at arms length, not being thoroughly convinced.

In 2007 I became very ill with many symptoms: extreme fatigue, neuropathy, muscle and joint pain, heavy eyelids, loss of balance, nausea, weakness with swallowing, fasciculations, geographic tongue and a few others. I saw two neurologists both of whom did many tests ranging from brain MRI, NCS (nerve conduction studies), Coeliac AB's, SPEP, GTT, LFT's, ANCA, ANA, ENA's to name a few. There were no significant abnormalities. In particular the ANA's and ENA's were negative. These were repeated about two years into my illness and again were negative.

Between then and now some symptoms have lessened like the fasciculations and the extreme fatigue. However other symptoms have emerged like orthostatic tachycardia, peeling skin in mouth and pain in eyes. I have also been diagnosed with Gastroparesis, with Bronchiectasis and with Peripheral Neuropathy.

Discounting the Fibromyalgia diagnosis, I have felt that all of these separate diagnoses were not disparate events but likely linked under one umbrella diagnosis. Their timing of onset was too compressed to be coincidental.

Recently (2016) while at my Pulmonologist's appointment he said to me "I am seeing an autoimmune picture here with these results". His statement prompted me to go to my GP and ask for various immune marker tests to be done. These were taken and a few days later my GP asked for me to come in to see her.

She began by saying that my results were pointing to a Sjögren's Syndrome diagnosis. The ANA titre was raised to 1:1,280 and the SSA Anti Ro was positive as was the Anti Ro52. The SSB Anti La was negative. I have now been referred to a Rheumatologist for confirmation of diagnosis.

So the old adage that it takes about six years to get diagnosed with Sjögren's, often because the autoimmune markers may not rise for several years has been true in my case.

Paradoxically it is a relief to get 'abnormal' results after living with my own scepticism for so long.....leave alone anyone elses!
I've just found this from 2015 that discusses Sjogren's being misdiagnosed as Sjogren's Syndrome (SS).

"Comparing patients with dryness with or without SS in our study, we noticed a high prevalence of FM (fibromyalgia) in both pSS (63%) and non-SS (43.8%) groups. Moreover, 36.7% of patients with fibromyalgia referred for LSGB (lip biopsy) because dryness symptoms displayed LSGB with focus score of ≥ 1 and they met the AECG criteria for SS. These data suggest that fibromyalgia is a trick, as differentiating it from diffuse muscle skeletal pain and fatigue of SS is not possible, thus underestimating FM diagnosis in SS. On the other hand, dryness and fatigue are common symptoms in FM patients. Our data suggest that SS should be investigated in patients with FM and dryness"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4332430/
 

Sidney

Senior Member
Messages
146
Location
East Sussex, U.K.
Interesting question. I can no longer seem to regulate my temperature especially during a crash. I am either chilling or sweating profusely. So for me it is both. Not diagnosed with SS, only EBV induced CFS/ME. I am also interested to know your experience @Megan17 ~Andielyn
I have this problem. It may be related to over-stimulated adrenergic receptors. If the Raynauds Syndrome kicks up or my hands/feet start sweating I can diminish the symptoms with a small dose of an adrenergic alpha receptor blocker, like trazodone. If I am feeling hot all over, another tiny dose of beta blocker seems to help.

It would be interesting to know what is agonizing these receptors. Certainly the elevated norepinephrine associated with hyperadrenergic POTS is involved, but is it the whole story? If I have the adrenergic auto-antibodies found by Fluge and Mella, that would explain a lot.

http://www.ncbi.nlm.nih.gov/pubmed/26399744
I don’t know if such a late entry to this thread is possible ...I’ve only just noticed the thread.
I was so struck by a number of the posts here... I have insane temperature regulation - nearly always terribly cold; Raynaud’s disease, etc.
I was diagnosed with Sjogren's years before mecfs (though I had long suspected mecfs). Mecfs was confirmed 3 - (?) years ago, but apparently I still have Sjogren's, with possible RA, lupus, etc., connective tissue problems.
And bad most of the time OI and POTS when crashed.
Megan 17 seemed to me to have a similar cocktail- I have not found a doctor who will include the whole works!