I Think I am Going to be Diagnosed with Sjogrens

[rubyslippers]

I have 17 of the 20 symptoms listed on a site. I had no idea my dry eyes were connected with my hoarse voice, swollen salivary gland, and so on. Blood work tomorrow.

Does this change anything about managing my dry eyes? They were 80% better the last couple of weeks and now they are bad again. I thought topical antibiotics for pink eye did this, but I think I have this disease. Any advice?

[Silverlady]

Best suggestions

The best suggestion I can give you is to follow this forum and also visit www.sjogrensworld.org

It is a worldwide forum for people with Sjogren's Syndrome. I suffer from this disease

Good luck to you.
Billye

[rubyslippers]

Thanks. He said we have to rule out a couple of other things and then I will be off to Virginia Mason to a rheumatologist. Right now my choking due to hoarseness and dry throat have to be investigated. Thanks SO much for that link.

[atta]

Blood test isnt enough for Sjörgen test

Hi,
Biopsy test is important too! If you got blood test negative, you should take a biopsy test.
Wish you good luck

[Lucy]

Biopsy test can also leave lip numb after the procedure. Not just temporarily, either. So a lip biopsy should be undertaken only with good informed consent. Lucy

[eva]

Hi

Hope you are wrong and don't have SS - my blood work was positive but the SS Clinic in Toronto advised me to have the lip biopsy because it also tests for lymphoma.

it wasn't the most fun experience of my life but I guess it was worth it - of course it came back positive but that was expected.

Without going into details, I now know that I had SS for over 20 years (swollen gland kept coming and going - as in swelling up and going away within 4 hours, occasionally bright lights bothered me. Never even thought of telling a doctor about it until "real symptoms" showed up. Dry eyes to the extreme. Also tested positive for Lupus for 20 years and thank God I never had symptoms other than low white blood cells which is the reason I was tested in the first place )

Anyway, SS can "lie dormant" as far as I am concerned. Just waiting to rear its ugly head.

It's also a disease that goes from "not so bad" to extreme. Seems to be the luck of the draw.

Hope it's "not so bad" in your case if you do test positive

eva

[rubyslippers]

Several things:

Silverlady, I registered at the SS site you mentioned but cannot get it. They never sent me an activation email and it is not caught in my spam. I even had my server check. Then I tried 7 of the staff contact emails and all are dead emails including the contact email given for the site in general. Any ideas?

At this point my hoarseness is the most worriesome as I have laryngeal spasms which cause me to be unable to breathe for a few seconds and are terrifying. My friend is a speech path and has given me some coping techniques. Sometime this week, when there is an opening, I am to have a laryngoscopy under general anesthetic. They want to rule out tumors, nodules, and just see what it looks like.

My doctor does not want to order blood work or biopsies at this point because he says they are not conclusive and can bey very misleading and result in unnecessary treatments. After the above mentioned procedure he plans to send me to a rheumatologist at Virginia Mason to look at the possibility of Sjogren's. The doctor said my symptom cluster could mean lots of things. My eyes are worse today as I did not use a humidifier for the last 24 hours we were worried that maybe it was the problem and so we cleaned it good and bought an anti-bacterial liquid to treat each batch of water. It is back on and running, but my eyes are very unhappy, not really horrible but I am aware of almost every blink. My dry mouth was also worse last night. Problem is that besides these odd symptoms, I feel quite healthy. It is very frustrating. I have been put on a medical leave from work. Since I am teacher of juvenile males in a jail setting, I cannot stress my voice to teach. So here I sit, waiting---

[rubyslippers]

Also, if it is SS why do the symptoms come and go. Had a great day with my eyes yesterday and now miserable today. Dry mouth mainly at night. Seems to me if it were a disease it would not come and go.

[calli66]

I have SS---just thought I'd let you know that symptoms come and go for me, too. People with SS are always talking about "flare-ups" and that describes it---and makes it harder to figure out what's really happening. Is it the SS, or am I just tired? Is it allergies or is it the SS? Maybe I'm just thirsty. Am I achy because I'm 58 and just spent the afternoon waxing the car, or is it the Sjogren's? By the way, I have dry mouth mainly at night, also.

Plus, there are a lot of "nebulous" symptoms with SS, from what I understand. I'm new to the diagnosis (since last August), but maybe I've had it for 25 years. I have had dry eyes for years, and just dealt with it, but it wasn't until my white blood count and platelet counts were a low that my doctor sent me for tests. So I'm glad they "found" something---it's not so bad--takes some of the worry away.

Did they do an ultrasound of your thyroid? An acquaintance of mine complained of hoarseness and they found a thyroid gland tumour that was pressing on her vocal cords---she had the thyroid removed. But your doctor is right, there are many things that can cause your symptoms. I would think the tests for auto-immune antibodies would be useful.

I don't know why you're having so much trouble with the Sjogren's World site---hopefully that will be solved and you can join in the conversation there.

Calli

[Silverlady]

Sjogren's site

In case I messed up, here is the link: http://www.sjogrensworld.org/index.html

We have some staff on vacation, some teaching school and the site is entirely voluntary (they all have Sjogren's themselves) so it may take a few days to get back to you. The staff links are not dead. I'll mention this to our tech person and see what is going on. I'm on leave of absence myself from moderating because of illness issues myself. But I'll see what I can do to help.

Billye

[rubyslippers]

Thanks to all of you. Your information is quite helpful. I have had dry eyes off and on for about 5 years but really bad after my CHristmas bout of pink eye. Since then the hoarseness and the nightly dry mouth have been there too most of the time. My symptoms, based on what I have read are pretty mild. I had an ANA of 40 about 5 years ago and a rheumatologist felt I was probably at the beginning of something that would not manifest for years. Soooo--here I am at age 51.

[eva]

rubyslippers

I had ANA positive for over 20 years and no symptoms of Lupus. The specialist told me there are people walking around on the street who are ANA positive and never know about during their lifetime - so if I were you, I'd ignore it - I am glad I did. In fact i have something like 8 out of the 13 Lupus markers and the doctor said: "Let's face it, you have weird blood" - Better weird than sick.

Hope you get on the SS website soon - it's very helpful.

I hate surprises - one of those people who doesn't like to wait to open Christmas presents - Wow! Do I have a hate relationship with SS? You bet.

Daily surprises and I cannot figure out the cause. Why are some nights better with my eye and others are not? Cannot figure out the variables.
Not food, not drinks, not humidity, not stress - I thought of everything.

I came to the conclusion that SS exists in my body to p... me off (just kidding)

eva

[rubyslippers]

I saw the ENT yesterday and had a laryngoscopy. He said if my hoarseness were Sjogren's he would have seen more dryness down there. What he does think is that I have LRP--acid reflux up into the larynx and he said that can be Sjogren's or not. I had ANA, anti SS A and B, and a complete blood panel done yesterday. The ENT deals with lots of Sjogren's and said he thinks I have either mild or early and that I may have had it for a long time. He says he sees lots of people with a mild case that never progresses. My eye doctor documented dry eye (not nearly as bad then) in 2002. I am kind of feeling it could go either way and not sure I need to keep the appt. in Seattle (500 mile round trip) with the Virginia Mason rheumatologist or not. My eyes were pretty decent again today.

[calli66]

ruby s--

It's good you got the blood tests--and the diagnosis of acid reflux should be helpful in resolving the hoarseness.

Whether the dry eye is due to SS or not probably won't make a huge difference in how you treat it and get it stable. Plugs, drops, compresses, gels, goggles, lid scrubs---I do 'em all, and they all help.

My eyes (my main symptom) have been much better the last 6 months, since I've been taking Plaquenil. I've also been taking thyroid meds the last 6 months, too. And I also quit wearing contact lenses. The improvement is probably the result of a lot of factors, but I don't discount the medications.

I think there's definitely a benefit from having a listening, caring doctor (regardless if they're a rheumatologist or not)---that way, even if your tests come back negative, they may have you start on medication anyway. My rheumatologist says she makes a diagnosis equally by using blood test results and the patient's symptoms. I think that's a good way. She's not a very "personable" doctor, but she did a thorough series of blood tests to rule out possibilities and narrow down the diagnosis. Even then, she does not say the SS is "definite"----it's a vague and hazy "syndrome" and hard to pin down.

A 500 mile round trip to see a doctor, especially for an on-going chronic condition, would be impractical---for me, anyway. It's sort of an act of desperation, stemming from your unbearable symptoms and uneasiness about what's wrong. But there ARE good doctors near any major metro area---it takes awhile sometimes to find someone who'll listen. But in the end, having someone who you can go see often--who can adjust your treatment and monitor progress----that will give you more support, I think. Just my opinion of course.

Good luck,

C

[rubyslippers]

C, the plan is for the long distance doctor to diagnose and monitor, while my local GP will carry out the plan. My husband has early onset Parkinson's (he was 49 when diagnosed and so needs special care) and I am hearing impaired and have a BAHA implant. and both our specialists are in that city where the rheumatologist is, so we would just add a THIRD doctor to our every 6 month trips that we make any way. I did not imagine that age 51 and having always been in very excellent health and shape that these things would become such an important part of my world.

I do agree that my local doctor can probably handle whatever the specialist wants carried out.