Newbie to the SjS world

[SonyaR]

I just want to thank everyone here for all the wonderful topics and your responses.

I was just dx in April 2009.  I am one of the fortunate ones who only went from my PCP to an Ortho Specialist to a Rheumy and had a dx in 4 months.  I am sure the main reason is because my primary complaint was joint pain.  Luckily my PCP does not try to just "treat" things out of his field and sent me to a good Ortho doc who questioned all the different joint pain and didn't pass it off as age related.

The dryness in my eyes and mouth aren't very bad yet (since I didn't realize that what I was experiencing was not normal).  The joint pain and the fatigue are the worse but I am getting some relief with the Plaquenil.

After reading a lot of your posts and responses I am realizing that some of the other "weird" things I have been experiencing for the last five years are probably related to SjS...
       Frequent spells of Vertigo that have me laying flat due to the dizziness and loss of balance.  These can last moments or hours.  The 1st episode lasted a
       week.
       Tartar buildup even though I haven't changed how I maintain my teeth.
       Severe headaches.
       Change in taste.
       Muscle spasms.
       Stomach issues.  Certain foods seem to "go right through" me.
       Night blindness.

Thanks again for developing this site and to all the "veterans" of this syndrome reading and responding to us newbies.

Sonya

[Patze]

Hi Sonya,

Let me welcome you to the SJS World!  Please make yourself at home and stay awhile so we can get to know you!   Look around the board when you have some time as there are just tons of topics and oodles of information that you might find useful.

I'm so glad to see that you've gotten a diagnosis so fast, how lucky you are!!!!  I'm teasing, but your doctors are sharp and sure sound like keepers!

You're symptoms could be SJS, or they can be a combination of things.  I've noticed that you talk about night blindness, have you seen an opthamologist about that yet?  If you have, what does he say about it?  I see the optometrist a couple of times a year (because I'm on Plaquenil), and the opthamologist once or twice a year to keep an eye on my very dry eyes.

I'm curious, what does your dentist say about the unusual build up on your teeth? 

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

Take care -

Patze

[lynnmarie219]

Hi Sonya and welcome to Sjogrens World!


I'm glad that you found us and I'm also glad that you have "on the ball" doctors that didn't dismiss you! My PCP is like that too and was the first one to question things and run tests....which came back positive and he referred me on...the rest is  history!

Take your time and read all that you want to and ask any questions that come to mind....just jump on in when you are comfortable doing so!

Welcome to the family!

[Bernice]

Hi Sonya!

Welcome to the pack!

Peace & Be Blessed!
Bernice

[SonyaR]

You're symptoms could be SJS, or they can be a combination of things.  I've noticed that you talk about night blindness, have you seen an opthamologist about that yet?  If you have, what does he say about it?  I see the optometrist a couple of times a year (because I'm on Plaquenil), and the opthamologist once or twice a year to keep an eye on my very dry eyes.

I'm curious, what does your dentist say about the unusual build up on your teeth?

Patze,
I just recently went to the optometrist for a complete checkup.  He uses a machine that takes actual photographs of the inside of the eye instead of dilating them.  Everything looked great he said except for a small amount of dryness.  He is not overly concerned about any side effects from the Plaquenil since I am on a mild doseage.  The "night blindness" is more of an issue if I am in an unfamiliar area.  On coming headlights look more like huge stars than round circles and if I look directly at them they momentarily blind me.  I am getting glasses with anitglare on them to help with the problem.  He feels that it is a symptom of SjS.

I have not been back to the Dentist since i have been diagnosed.  When I went a year ago the hygienist kind of got on me that I need to take better care of my teeth.  When I went back this spring I had an appointment with a rheumy and the ortho specialist had mentioned either RA or Lupus.  During the cleaning my jaw "locked" up on me 4 or 5 times and i had to use my hands to shift it back in place.  The Dentist was VERY concerned about this but when I mentioned that I was going too see a Rheumy he seemed less concerned and said we would discuss the problem at my next appointment after I got a diagnosis.

I feel I have a pretty good team that are looking at the total picture to help me control this.

Sonya

[Patze]

Hi Sonya,

I do remember the "halo" around headlights at night!  Boy do I remember them all to well, and not very fondly either!   Seriously, it got to the point that I almost had several accidents, and just quit driving at night.  Since I've been on Levoxyl, I can see a lot better at night (yep, have anti-glare on my glasses too), go figure!

I realize that you probably still have tears, but did your opthamologist do an evaporation test?  If he did, what were the results? 

Take care -

Patze

[SonyaR]

Patze,
What is involved in the evaporation test?  Not sure if he did one.  Who prescribed the Levoxyl?  My eyes aen't too bad yet.  I wake up some mornings with all the junk in the corners and it takes a little while for them to clear up but those mornings aren't the norm.

Do you have problems sleeping?

Sonya

[Patze]

Hi Sonya,

The evaporation test is were the opthamologist puts a stain type drug in your eye and has you blink a few times, and basically counts how long it takes for your tear film to start breaking up.  The quicker the break up, the dryer the eye.  

Levoxyl is a standard T4 for a hypothyroid problem (Hashimoto's in my case), and it's prescribed by an endo (I still haven't found one that wants to work with me, not just tell me what is what and boot me out of the office ).  Ugh.

Yep, I do have apnea problems, and use a CPAP nightly.  Thankfully it works fairly well and I don't wake up to those daily headaches all the time anymore - just an occasional one.  Have you had a sleep study done?

Have you been diagnosed with Fibro?  It also causes a lot of grief to several members - me too.

Take care -

Patze

[Katybarstool]

Sonya

I was having terrible problems with headlights at night. They made my eyes so uncomfortable, that I could hardly see. When I went to see the optician, he suggested it was the preservatives in my eye drops that were causing the sensitivity. He was right, when I changed to preservative free, single use ones, the headlights didn't have the same effect.

Kathyx

[Patze]

Hi Kathyx,

Wow, I never put the two together!  I learn so much from y'all!!!


Patze

[SonyaR]

Hi Sonya,

The evaporation test is were the epidemiologist puts a stain type drug in your eye and has you blink a few times, and basically counts how long it takes for your tear film to start breaking up.  The quicker the break up, the dryer the eye.  

Levoxyl is a standard T4 for a hypothyroid problem (Hashimoto's in my case), and it's prescribed by an endo (I still haven't found one that wants to work with me, not just tell me what is what and boot me out of the office ).  Ugh.

Yep, I do have apnea problems, and use a CPAP nightly.  Thankfully it works fairly well and I don't wake up to those daily headaches all the time anymore - just an occasional one.  Have you had a sleep study done?

Have you been diagnosed with Fibro?  It also causes a lot of grief to several members - me too.

Take care -

Patze,
No I have not have a sleep study done.  My main probelem is I wake up for whatever reason be it pain, my husband snoring or I have to go to the bathroom form all the water I drink during the day and then I can't get back to sleep.  The pain is lessening so that is quite the issue it used to be.  I plan on asking my rheumy for some solutions on my next visit.

As of now I have only been diagnosed with SjS.

Kathyx,
I am not using any kind of eye drops yet but thanks for future advice.

Thanks to all of you for your input!

Sonya

Patze

[Katmandu]

Hi, Sonya!

I'm a newbie, too. I just started posting myself, though I've been reading this site for a while. You and I have very similar experiences, by the sounds of it. My most recent experience, which is what  I was researching, is vertigo/dizziness/migraines. I haven't had any stomach problems with particular foods or the strange taste in my mouth. But I DO get what I call "phantom odors". I go through periods sometimes lasting for days, where I smell things that aren't there. Sometimes it's nasty, like the smell of plastic melting or electrical wires frying (which was really a little scary, lol). Other times, I've smelled things like a chocolate cake, warm from the oven. That one isn't too bad, except it's bad for the diet, lol!

As for the dizziness/migraines, I've been reading lately that sometimes people may be having a migraine, and not know that's what it is. For instance, all my life, I had sinus problems. I even had surgery many years ago to help alleviate it (just minor surgery, for deviated septum). I had almost no sinus infections since the surgery, which was 20 years ago. But here in the last couple of years, I've had pressure around my forhead, a feeling of stuffiness in my nose, pressure around my ears, etc. It's how I remember sinus headaches, so I self medicated with OTC sinus pills. Then I read these articles about migraines, and tried one of my prescribed migraine pills. It helped, the dizziness was better for a couple of days, then came back. (BTW, the dizziness has been pretty constant, with some days worse than others, for about 6 weeks now.) So, in the meantime, I found a reference here on SjS world, that it may just be inflammation of nasal passages and ear canals. In the last couple of days, I've just been taking OTC Naproxen, per label instructions, for the anti-inflamatory properties. I seem to be doing better today. It may be the Naproxen, or it may be that the dizziness has run it's course. Who knows, lol.

Anyway, that's what I've been doing for the dizziness. I've also dabbled with some vertigo exercises I found on the net. They're supposed to desensitize the brain to the dizziness. But since they make you dizzy, you have to be REALLY careful! BTW....are there things that aggravate your dizziness. I've found that shopping-----I think it's the constant changing of focus----really aggravates mine. How about you?

Well, I've gone on and on yet again. Anyway, welcome to the boards. Hope you're having a great weekend!

Kat

[Scottietottie]

Hi Sonya 

Welcome to Sjogren's world.

Take care - Scottie 

[Pisces24]

Welcome!   I am a farily Newbie too as I was finally diagnosed March 2009 - after 6 years of "duh" doctors.

What made an immunologist test me was 1)Bad teeth cavity problems "4 cavities in whole life up until about 8 yrs ago and then 3-4 per yr".  2)Partroid swelling in the past  and 3) easily gotten sinus infections.

I am sure my dentist though I never brushed my teeth either but I flossed, brushed w/prescription toothpaste, fluoride rinses, etc etc and I still had problems.  Soooo now at least he believes me and I don't get "the look " anymore. The teeth is where SJS is hitting me the most at least symptom-wise for me.

Have they recommended to you sinus rinses (sea salt & distilled water). It has really cut down my sinus infections etc. doing that.

Welcome to the reluctant members of the SJS club!

[SonyaR]

Kat... I have yet to notice any one particular thing that brings on the dizziness.  I have been doing everything from sitting down to walking and everything in between when it has come on.  Recently I have been smelling things no one else is, especially the hot electrical thing!  I never would have thought it might be SjS.  Thanks for the input.

Pieces24...I haven't had a lot of trouble with sinus infections yet but will keep the rinses in mind whenever that finally hits my plate!

Thanks everyone for your input.

Sonya