Could it be Sjogren's?

Allergies, blood and immune system
1

Hey i'm a 20 year old male and literally have no clue what is causing all my problems. I know it is rare that I could have any autoimmune disease let all alone Sjogren's as i know it is predominantly found in woman but it seems to fit to my symptoms.

Okay so it started 6 months ago when i was 19, i was absolutely fit and healthy until i came down with what i thought was a bug, i was violently sick for only a day but it was pretty bad, i ended up throwing up so much i think i got down to my stomach lining as my sick turned orange and tasted bitter. However i got slowly better but i got pain in my testicles for a while but i just put that down to the violent throwing up, so a month or so down the line, i start to get really bad stomach and back pain, the docs just thought i had gastroenteritis and put me on meds, didn't help. So they find ketones in my urine, which was not diabetes as they tested, they ended up diagnosing me with a UTI, so gave me meds, made me feel a bit better. But i still always had problems with my stomach, i couldnt eat without feeling bloated and i would get chest pains along with eating. They kept giving me all the PPI and gaviscon but didnt seem to help but the symptoms back then were not TOO bad. 

Then came the dry eyes, out of nowhere my eyes became very very dry, irritated and red. I had an eye test they said my vision was fine but it may be dry eyes, it was really bad for a month or so then got a bit better when my doc gave me these drops, surpisingly enough they werent lubricating drops i think they were for allergies or something. Then my eyes werent as gritty, dry etc but i always had pressure behind my right eye and my vision is slightly out of focus, so i went to an opthamologist who said i did have mild dry eyes and blepharitis but my eye pressure was fine. So i'm using drops and scrubbing my lids everyday but still doesnt really explain the out of focus vision and pressure behind eye along with bad headaches pretty much every day.

People put my dry eyes down to playing on xbox but i play waay less than i used to when i was a kid and i NEVER had a problem with my eyes until after i got unwell. Plus i heard dry eyes comes along with Blepharitis, so i dunno whether an allergy has caused it but something has and i am sure it isnt computer usage as I make sure to blink alot when using and turn down the brightness. 

Now here is the part that worried me, around 2 months ago i started getting neck and back pain only mild, didn't think too much of it. Then it got progressively worse and my shoulder blades would burn and my neck was really stiff and sore and all down my spine would hurt. My joints and muscles were achy and would always crack. Bear in mind before this i was a perfectly healthy 19 year old who would play football twice a week and go jogging regularly. I played football a couple a weeks ago even though i had this pain, and my heart rhythm felt very different, it sounds stupid i know but it felt as if it was beating louder and harder, when i was playing it felt as if i would get minor palpitations and i could feel my heartbeat in my throat which i never usually do. My legs were pretty much achy and done 20 mins in and i can usually run for hours, i just carried on due to adrenaline, i could hardly walk for the next few days and weirdly enough i had pain in my lymph nodes. My neck muscles were sore and around my armpits it was just a crazy symptom for me.

Anyway the doctors have tested my blood for god knows what including lupus, thyroid problems, deficiencies, nothing has showed. What has showed is dry eyes and blepharitis and gastritis/duodenitis (inflammation in the stomach and intenstine) Which has means i can't eat alot of food i used to, or drink alcohol or OJ etc. I have lost almost 10lbs in the last 6 months and i'm skinny as it is! I'm only 9st 4lbs now and i'm not happy with that, i get told alot now that i am looking thin but there is nothing i can do about it until i sort this out! 

I just need to get to the bottom of this, i'm seeing a rhuemotologist soon so i hope they can shed some light on it and maybe rule out RA, also a possible brain exam was mentioned to rule out MS, I do feel like it could be MS as i am having eye trouble in one eye vision wise and burning pain but then again i dont have any cognitive problems or balance problems which is highly common in MS. The dry eyes and pain just made sense to consider Sjogren's. Of course it wouldnt be great to be diagnosed but I feel like it may be better than MS i'm not sure, it's just i've seen Venus Williams (tennis player) be so successful even with all her symptoms and she seems to manage them well. I'm really just hoping i can get back into football in some way as i have loved playing it since i was a kid and i was pretty good so i've been told!

Anyway i am just assuming things but anyones advice or input would be greatly appreciated, whether you think it could be this or any suggestions on anything else would be great, thanks

2

Riggs, I'm a former nurse and a Sjogren's sufferer and I can't say very much of this sounds like SS to me, apart from the dry eyes. Not sure where you're living but this spring (you mentioned six months ago) the birch pollen count in NW Europe (incl. UK) was many times higher than it normally is and those of us who are allergic to it - including myself - had a truly terrible time. My eyes were so dry, itchy and gritty I thought my Sjogren's had come back with a vengeance (I'm more or less in remission these days) but it cleared up once the season passed.

It sounds to me as if there's something else going on in your case and the dry eyes might have been a bit of a red herring. I wouldn't, however, rule out another auto-immune condition. I'm interested to see you've already been tested for lupus. I think seeing a rheumatologist is your best bet, as they have a good overall view of auto-immune diseases in general, and it's also good to see that a brain scan is on the cards, just in case. However, MS produces a specific kind of visual problem, with the central area of vision being specifically affected, so that doesn't sound very likely.

Maybe someone else on this site will have had similar symptoms to yours. Auto-immune conditions in general produce a wide range of often-unrelated symptoms in different people. Good luck with seeing the rheumatologist anyway.

3

I always thought it may be unlikely due to the number of woman who have it compared to men, i guess i was just trying to look for something that linked all my symptoms together, hopefully the rhuemo will shed some light my appointment is actually in 3 days so i'll let you know what he says, maybe it is another autoimmune disease such as RA but it may be something completely different but thanks for your reply and taking the time to read my story! smile 

4

Did you ever get a diagnosis? I've been experiencing pretty much the same symptoms as you were.

5

I have these same symptoms, I've been diagnosed with celiac and sjogrens syndrome, you can have normal blood tests and still have sjogrens. You need a salivary gland or lip biopsy

6

I have an appointment setup with my gp, hopefully this time around I get a referral to good rheumatologist so I can get tested. I assume that this is the type of doctor I need to see for this lip biopsy test?

In the mean time, my eyes are now my main concern. The stomach issues have mellowed down.. although I do still get bouts of gastritis when I eat certain types of food, but the pain is tolerable and nothing zantac can't fix. The issue with my eyes is that they are really, really dry and red; I end up using a lot of eye lubricants to make it through the day. I've also developed brown pigmentation on the white part of my right eye - one eye doctor dismissed this as a nevus(freckle) while another said that this is PAM (Primary Acquired Melanosis). The latter is what concerns me most, as it could develop into something really nasty...

Is there any link between Sjogren's or gastritis and pigmentation in the conjunctiva? Has this happened to anyone else on this forum?

The other thought I had is perhaps the constant dryness is what led to the development of the pigmentation.. I read on this study that there is a link between pigmentation in the eye and "chronic inflammatory conjunctival disorders". I'm not sure if dry eyes would fall into this classification though...

https://www.ncbi.nlm.nih.gov/pubmed/8309267

7

There is definitely a link between sjogrens and gastritis. It causes inflammation throughout the whole digestive track. It's like mast cells behaving badly. I haven't heard of a direct link between sjogrens and the pigmentation in the eyes but that's not to say there isn't any cases out there. If you decide to do a saliva DNA test for sjogrens, you'll probably have to find a dentist in your area that can do a salivary swab. My rheumatologist was pretty worthless in this area other than the standard blood test they do. I wouldn't do a lip biopsy though, even that is starting to become cloudy in diagnosing sjogrens. The salivary swab is usually accurate in it's genetic marker testing.

8

I've also just been diagnosed with madt cell disorder, histamine intolerance. It too causes everyone of these. It's basically systemic inflammatory syndrome....mast cell / inflammatory cytokine storm

9

What kind of doctor did you have to see to get this diagnosis? Did you mean to say malt cell disorder? Is this separate from the sjogrens and celiac disease that you've been diagnosed with?

I really appreciate you taking the time to update this thread; thank you for that.

10

Its called mast cell activation syndrome. Its when your immune system goes haywire and kind of attacks your tissues..mostly eyes, mouth, throat, stomach and intestines. Its also associated with high levels of histamine release in the blood. It is separate from celiac and sjogrens ,however mast cells equally play a role in both...and can coincide with both disorders due to inflammation. Celiac damage triggers mast cells, autoimmune triggers mast cells so they are all closely related. You would need to discuss it with your primary GP to see if they have knowledge of this, if not you will need to see an immunologist. They will test for blood tryptase levels, and you need to do a 24 hr histamine urinalysis to determine histamine levels in your blood. there are two types,,,mastocytosis which is severe and life threatening, and mcas which is not usually life threatening at all. If your tryptase is normal, then the urinalysis needs to be performed to check for histamine levels. Normal tryptase blood levels will usually mean no mastocytosis. Elevated histamine levels with normal tryptase will usually indicate mcas...which is what I as well have. I have to eat low histamine foods to get this inflammation under control.

11

Hey,

First let me say i share your frustration. Reading your symptoms i can totally relate and believe our situations are similar in some degree. For me, around 9 months ago (shortly after my AZ vaccine) i started to get a stiff neck and shoulder pain, along with constant acid reflux. After having some pretty intense headaches (likely tension headaches from the neck pain) I got an MRI but no luck on diagnoses, then came severe dry eyes where i now cannot wear contact lenses. Eye doc diagnosed me with Blepharitis....not long after this i would weird heart palpitations on occasion and ive had some other stomach issues and recent testicular discomfort along with random bouts of fatigue.

in summary current symptoms are: Constant stiff neck and shoulders (seeing physio) Cracking joint pain fatigue Extremely dry, sore eyes Stomach issues (acid reflux mainly)

Similar to you, Sjogrens immediately got my attention as its the only thing that lines up....finding it hard to get a diagnosis. Any suggestions would be much appreciated.

Thanks for the original post, comforting not to feel alone.