Author Topic: I might have Sjogrens syndrome  (Read 1716 times)

andymn

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I might have Sjogrens syndrome
« on: March 08, 2010, 01:09:41 PM »
I'm 32 and male, so it seems unlikely, but we've ruled out just about everything else.

My parotid glands have been swollen for the last 3 years and hurt when I eat. It's been that way since I had a nasty case of mono about that long ago. I've had X-Rays and scans to rule out various things, but the ENT said just give it some time and it'll go away. Yeah, not so much.

So after a year and half of dry mouth, wincing every time I eat and having friends and family ask me if I'm sick because my glands are puffy, I went in to get it dealt with last week.

My doctor referred me to a rheumatologist and I saw her today. She looked at my fingernails and said it looked like I had Raynaud's phenomena which she said had something to do with connective tissue disorders and she looked at my eyes and asked if they burned or itched. And I hadn't really thought about it but sometimes at night they burn, but I chalked that up to smoking (I'm quitting!) or eyestrain from the computer.

One odd question she asked was if I had any European background, and I said Swedish and a few others. She said Sjogren's really common in Minnesota because of a high northern European population here (I'm not a native Minnesotan, but growing up my family nicknamed me Swede, because of my blonde hair! So, I'm fitting in well here in Minnesota, although the cold, dry air is a bit annoying).

Anyway, I found this site last week when my doctor suggested Sjogren's and thought I'd share my story. I've already learned a lot here in the past few days. I really, really hope they can do something about my parotid glands. The swelling makes me pretty self-conscious.

Andy

Daisy1234

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Re: I might have Sjogrens syndrome
« Reply #1 on: March 08, 2010, 01:15:41 PM »
Andy has a diagnosis of Sarcoidosis been ruled out in your case?  Sarcoidosis is an imflammatory condition that can result in parotid and other glandular enlargement but ppl with this illness generally do not develop the SJS antibodies.

andymn

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Re: I might have Sjogrens syndrome
« Reply #2 on: March 08, 2010, 01:19:02 PM »
No, I haven't heard anything about that yet. I'm waiting for blood work. They say three weeks. But, I'll keep that in mind when I have my followup on the blood work. If it's negative for SS, that might be something to look at.

YYC_ Mommy

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Re: I might have Sjogrens syndrome
« Reply #3 on: March 08, 2010, 07:45:26 PM »
Welcome Andy, I hope that you get some answers once your blood work comes back. I recently saw a Rheumy for the first time and he too asked what my heritage was, very interesting!


Pisces24

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Re: I might have Sjogrens syndrome
« Reply #4 on: March 08, 2010, 07:58:39 PM »
Hellow fellow Midwesterner.  :) I'm in eastern Iowa but have ton of cousins right around the St Croix. Gosh I hope they are able to diagnose your problem quicker than it took most of us.

I can really sympathize about your swollen partaroid gland as I had mine once swell up so bad under my right ear, it look like I swallowed a tennis ball and it got stuck.  I got 3 rounds of antibiotics to get rid of it and if the 3rd round had not have worked the specialist recommended flushing the gland. She said it is possible to get a blockage in there.  It was durn hard to eat too. Yeah the swelling is pretty noticable. Have they recommended using moist heat or massage? - it didn't work for me. And it being there close to the sinuses too, I bet your teeth/gums are achey?
Did they run a Schirmer's test for you on your eyes? It measures tear production and is very simple. Also have they ever run a test to see how you produce antibodies. On mine I got a pneuomonia shot and 1 week or so later they tested my blood to see how many antibodies I made. Normal is 14 and I made 2.  Those couple tests would help in pinpointing an anti-immune disorder.

You have certain symptoms for sooo long that just get yourself used to them and don't really think of them unless asked. It took them soo long to diagnose me I just started to tell them everything medically related. First time I heard anything about  European or any heritage background to go with Sjogrens. As far as I know, autoimmune disorders don't discriminate. Most of us are "muts" anyway.

Good luck in your hunt!

Patze

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Re: I might have Sjogrens syndrome
« Reply #5 on: March 08, 2010, 08:18:33 PM »
Hi Andy,

Let me also welcome you to the SJS World and family!  I'm sorry to meet you this way, but I'm glad that you found us!  I'm also glad to hear that you've been looking around the board as well.  And don't be shy if you have a question, as there is usually someone about that might be able to help.

I've not had the rheumy ask me about my heritage, but it would be in line with yours (northern Europeans, but then again, I'm a mutt and proud of it too!  ;) :D).  I sure am glad to see that your doctor is taking you seriously though!  I'm sero negative, and am so thankful that the rheumy is treating me!

Again, welcome, and I hope to chat with you soon.

Take care of yourself, and don't forget to keep us updated, okay?

Patze
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Billydude

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Re: I might have Sjogrens syndrome
« Reply #6 on: March 09, 2010, 12:38:46 AM »
Andy,  being 32 and male doesn't make it unlikely.   I'm 52 and male but have had swollen parotid glands for years.   There are many men here.

eyeamdry

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Re: I might have Sjogrens syndrome
« Reply #7 on: March 09, 2010, 01:18:53 AM »
The parotid glands have not reared their ugly head for me and I hope they don't.  My daughter has ear problems and gland problems and I always mention this to her.  She has autoimmune also, but not Sjogrens. 
Lucy
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andymn

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Re: I might have Sjogrens syndrome
« Reply #8 on: March 10, 2010, 05:20:40 PM »
Thanks everyone. My rheumatologist referred me for a shirmer's test (sp?) but I can't get in until June. My eyes aren't having many problems though. She asked if they burned or itched, and they do sometimes at night, but not so much I'd complain.

Reading about the fatigue has really hit home though. I'm a bit of an overachiever so I'm used to a busy life but there have been weeks where I just cannot function like I used to. Even staying home from work to have a "sleep in" day. During college, I worked full-time, played sports and did student government and never felt rundown and I was 26 then. Today, for instance -- 6 years later -- was like walking through knee deep mud.

Billy: yeah, the more I read, the more I'm learning that it's a disease that can hit you any age, gender, background no matter what. How old where you when you think the symptoms first started?

Pisces: Oh boy. I've tried everything to get my glands to go down. I do a daily massage with them and it doesn't seem to help. Ibuprofin used to work a little, but now they are so big, I don't notice much help. And I can feel then in my ears and my sinuses, especially when they flare up. Some weeks are better than others. And the more I'm reading, the more I notice common symptoms to what I've been having. My nose for instance is like the Sahara. I get mini-nosebleeds all the time and the dryness gets downright painful. I chalked it up to dry Minnesota winters, but when I think about it, things don't change much in the summer. So I can relate with wat you are saying. Sometimes you just end up living with something and you get used to it no matter how annoying.

I'm just really optimistic I can get a diagnosis of some sort and get some sort of treatment. Otherwise, I'm getting these glands yanked no matter the risks. It's really been that painful and that disfiguring. Of course, I think the dry mouth will be there forever, as that's been my other symptom for the last few years. At least I'll be getting my 8-10 glasses of water a day and then some. I'm a water addict lately.

Billydude

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Re: I might have Sjogrens syndrome
« Reply #9 on: March 11, 2010, 12:40:10 AM »
Andy,  I think I was in my early 30's.

navydad

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Re: I might have Sjogrens syndrome
« Reply #10 on: March 11, 2010, 09:27:50 AM »
Mine became full blown 2 years ago,, but I had neuro issues going on before that,, numbness tingling burning,, have you seena  neuro for teh walking through mud thing,, might be some neuro stuff going on,, I suggest you see one before things get out of hand,, and you end up like a lot of us here,, severe neuro problems and to late to do anythng abouit it

Suzy

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Re: I might have Sjogrens syndrome
« Reply #11 on: March 11, 2010, 03:27:32 PM »
Hi Andy,

It sounds like you have Sjogren's, in my opinion. I was a 19-year-old girl when I was diagnosed, so not the "profile" either. Mine started with the painful, swollen parotid glands, too. I used to have to spit my food out because it hurt so bad. Now I massage them all the time when I'm eating to milk the saliva out and relieve the pressure. It works pretty well for me. I think my toddler has started copying me :-) Also, I can relate on the chipmunk cheeks, although no one seems to notice but me.

I will tell you a little about my experience with my parotid glands. I was diagnosed with Sjogren's through a salivary gland biopsy. Not pleasant, but it offers a definative diagnosis and also rules out cancer, parotid stones, etc. Some years later, I had part of a parotid gland removed because I had a tumor (lymphoma is a concern for us). The tumor was benign, but the pathology stated that the gland was visibly and extensively damaged. Now, in the portion of the gland I have left, I have a permanent knot that is a damaged duct. My point is not to scare you, but I encourage you to purse diagnosis and treatment (I'm sure you will - it sound like you're miserable!). If you let the disease run amok it will destroy what it's attacking. I used to resist drugs because I didn't want to have to take something the rest of my life, but I realized they can actually slow the progress of the disease. I started Plaquenil a few weeks ago and am interested to see if it helps.

Good luck with everything!  :)
Suzy
I'm a 37-year-old stay-at-home mom to two little boys ages 8yrs and 4yrs.

Sjogren's DX '97, Raynaud's, Superficial Parotidectomy, Cholestasis of Pregnancy, Gilbert's, Vasculitis, Fibro, B12 & D Deficiency, Drug Allergies

Plaquenil, Lyrica, Rituxan, Vit D, B-Complex, Biotin, Calcium, Soothe XP

beej

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Re: I might have Sjogrens syndrome
« Reply #12 on: March 11, 2010, 03:58:11 PM »
Good to meet you, andymn, but sorry it is "this way".  I am so sorry to hear of the swollen glands, ouch!  I bet you can't get away from noticing it whether you are up and around or trying to get to sleep.  Hope you decide to keep coming back to this forum - I've personally had much relief in the sharing and ability to ask questions here with those who understand.

andymn

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Re: I might have Sjogrens syndrome
« Reply #13 on: March 23, 2010, 02:33:44 PM »
Well, I got my blood work back. Negative for everything. And I mean EVERYTHING. They took 14 tubes of blood and my results list is two pages long.

This is really frustrating. But from what I've been reading, not uncommon. I now have to wait 2 months to see the rheumatologist again and it's a month and a half wait to see the eye doctor for the Shirmer's test.

And the next step is lip biopsy, and I was kinda hoping to avoid that.

They really aren't kidding when they say 7 years until diagnosis. I really hope my doctors and I are looking at the right thing too. But everything seems to point to Sjogren's: dry mouth, fatigue, swollen saliva glands, raynaud's, occassional eye troubles.

Sincerely frustrated,
Andy

Patze

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Re: I might have Sjogrens syndrome
« Reply #14 on: March 23, 2010, 08:28:04 PM »
Hi Andy,

Ah, let me welcome you to the SJS sero negative side of the house.  It's a club I'd rather not belong to either, but I'm lucky to have a rheumy that is treating my symptoms.  Do you think that your rheumy would be willing to work with you on this?

You know, for me it seems that I have to have a biopsy to prove anything in my body anymore except the lip biopsy, it was ruled "negative", but there were some infiltrates, go figure (the biopsy was done several years ago, I'm almost curious to what it would show now a days, almost). 

I won't get into my story (I've posted it several times already, and I won't bore you with it), but if you do have a biopsy, please make sure that the doctor performing it has done a lot of them (can your rheumy or your primary recommend a good doctor maybe?).  Also, please check with the lab that will read the sample see enough of them every month so they know what they are looking for/at (sad to say that not all labs are created equal).

Hang in there, and take care of yourself -

Patze
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