New here...what an education!

[Jady]

I'm new to all of this....and scared.  I haven't even been to a doc yet.  Dreading that medical merry-go-round again.

Symptoms:  dry eyes (thought it was Lasik surgery and severe allergies....Allergy Queen here), dry mouth (thought it was all the allergy and asthma meds....can't get thru night without water), beginning to have teeth and gum problems,  dry you-know where (thought it was hysterectomy.....on Climara patches...not much help).  Tested off and on for 10 years for MS.  Tests inconclusive.  Suspicious spot on brain in MRI.  Hands and feet tingling, pins and needles, invisibile bug crawling sensations, sudden stabbing pains that make me jump then instantly disappear.  Intolerance to heat, fatigue (49 years old), depression (beloved Mother passed in July....very close....thought it was grief....on anti-depressants and Xanax).  Fingers go numb in cold weather.  Weight loss.  Severe allergies to all fruits and vegetables so can't eat right.

I always assumed that all of my health problems were because of allergies.  Of course, that doesn't explain the MS symptoms or extreme fatigue.  I've always been able to explain my problems away.  Accidentally stumbled onto Sjogrens while googling for dry eye/mouth problems.  I'm terrified to ask my doctor to begin testing for SS.  I guess I'm afraid that I have it.  I've spent hours here as a guest reading all of your posts.  I'm not in as much physical pain as many of you.  And I'm also terrified that I have that pain ahead of me.  All my symptoms fit here.

It's easier to stick my head in the sand.  But that would make eye/mouth situation worse!  LOL

Thank you all for taking the time to share your stories and problems.  It's a bittersweet comfort.
Jady in West Texas
P.S.  The dry heat is easier for most to tolerate than the humid heat.  I can't breathe in hot humidity.  Hope that helps those of you considering Texas.  And parts of Texas is VERY humid.  I stay away from those locations except in cooler seasons.

[tomsmom]

Hi Jady,
First, I'm so sorry about the loss of your mom.  I still call my mom to come over when I'm feeling pretty poorly and I don't know what I'd do without her.  I know how hard it is going to the doctor with vague symptoms trying to get answers.  You certainly have a lot of symptoms that look like Sjogren's Syndrome.  Others will be along soon to give you better answers to your post.  I want to welcome you and encourage you to go back to the doctor with your suspicions.  Hopefully then you can get on some kind of treatment that may help you feel a bit better. Take care!

[Carolina]

Dear Jady:

Welcome!   We all spend time assigning our various symptoms (conditions plagues whatever) to other causes.  Then the unifying diagnosis of Sjogren's causes everything to fall in place.

Well, that sounded easy, but of course it isn't.  And I still ignore and deny things all the time.  Sigh.

You are joining a marvelous group, for a not-so-marvelous reason.   

Welcome again.

Ask your questions, share your concerns, laugh and cry with us!

Keep us posted always.,

Kisses

Carolina

Just moved out of dry heat in El Paso (4 years there) to North Carolina, and the steam bath!  Hope I can adjust, as this is where we have to stay now.

[Jady]

Thank you so much for the welcome.  It's so liberating to be able to discuss these things without being considered a whiner.

After posting, I thought of so many more symptoms I have.  But I won't bore you all with things that you already know and live with.  I can't believe how things seem to be "right down the line".

There are several medical sites that declare no real treatment for SS.  Is it really so completely necessary to get it officially diagnosed?  What kind of relief are you all experiencing with diagnosis and treatment?  I've been reading about the medications you all have tried....some with success....some not.  I do not tolerate many medications well....even antibiotics.  My allergies are terrible.  I am currently not on Zyrtec or any of the other three allergy meds that I constantly keep on hand.  That's how I knew that the allergy meds were no longer responsible for my dry mouth and cracking lips.  I'm very very leery of trying new meds.  One antidepressant nearly killed me.  I even had an allergic reaction to multi-vitamins.  So I'm also afraid of supplements.

I hate to sound like such a coward.  But, when the neuro told me the MS tests were inconclusive and wanted to send me to a MS specialist in Houston, I refused.  What could he do?  I'm walking ok.  I'm not bed ridden.  I know a lot of meds are to keep symptoms from getting worse.  Maybe I AM a coward.

It's so hard to face all of this.  My mom kept me going.  She's gone and now I just sit without the desire for anything.  My poor husband has put up with a lot.  Thank you for your encouragement.
Jady

[meow]

Jady!!!!!! Where in West Texas are you? I'm in El Paso.

[Jady]

I'm in Odessa.  You know Texas.....we're both in the western part....but still a long away from each other.   

[Dolly Dimples]

 Hi Jady and welcome.
            I am so sorry to read of your problems, and you are certainly no coward!

               Anyone with allergies has to be very careful at all times what they ingest, touch or smell.

              It is natural to panic when these weird symptoms hit us, but please do not despair.

              You may never feel pain with SS, many of us here do not suffer great pain,

                       but have other distressing symptoms, some suffer  pain really badly, but most can get by with help from their Doctors.

                      It is trial and error at first, but stay with us and you will learn much about SS , and how it affects us differently.

                     Sorry too about losing your Mum, but come here and you will get sympathy , all the hugs you need, and you will  also learn .
                                                                        Hugs Dolly
                             
                         

           

[Pisces24]

Well first, good that the neuro is recommending you see an MS specialist. Leastwise the neuro (a-doesn't have a God complex and b-recognizes that someone else might know more than he/she does). Doesn't mean you have MS, just that you need that ruled out by a more intelligent dr.
Myself, I never go recommended to any other dr. I just saw one for awhile, dr would get tired of seeing me and tell me I didn't have to come back. My gp knew something wasn't right and kept sending me to specialists until I finally got diagnosed!

Most of us here had "allergy" or some other type symptoms sooooo long that we always attributed it to something else ie: pollen, stress and my favorite Old Age! Right that it is the Combination together that points to SJS.  I was just diagnosed by a blood test but lots of folks are "sero-negative" and still have SJS.

I had my dr tell me that autoimmune covers a big area. It is how the cells develop you get the label: fibromayagia, lupus, ms, lymphoma, etc etc. Soo the doctors monitor the heck out of us to watch for changes and catch them ASAP.

[lynnmarie219]

Hi Jady,

Just adding my welcome to you as well..... I'm glad to hear that reading some of the posts here have helped you a bit...it's always good to know that your not alone in what you are feeling and going through!

As far as how important is it to actually have a diagnosis...I think that depends on the person. There are many here that don't want or need an actual diagnosis.....as long as they have someone who is willing to treat any symptoms that need to be treated...they don't want that extra label that may add hardship or insurance issues.

Others here are looking for answers to questions they have had forever....trying to insure that they are really NOT crazy (and they are not). So you see...it really depends. Sjogrens is so individual is how it presents itself and in how we perceive it and react to it.

I wish you well in getting any treatment you may need for your symptoms....and in the meantime come here to learn, vent, laugh and make new friends! 

WELCOME!

[meow]

I'm in Odessa.  You know Texas.....we're both in the western part....but still a long away from each other.   

If we were in Europe, you'd be 5 countries away... LOL, here we are practically neighbors.
I answered your message

[Scottietottie]

Hi Jady 

Welcome to Sjogren's world. Sounds like you will fit right in here. I hope you get to see a doc soon and get a dx quicker than some of us did.

I hope you find the site useful.

Take care - Scottie 

[Jady]

Ok.  All of you gave me the courage to discuss this with my doctor.  He was actually intriqued and interested in my inquiry about SJS.  So.....we ran the blood work.  And Surprise!!!  Came back negative.  I know this happens frequently to many of you.  I believe there's still a possibility that I have it.  But, just like with the MS, I have decided not to pursue this any further unless I get more symptoms.  I mean...what would I accomplish?  I'm using the eyedrops and mouth treatments that many of you have recommended.  I just keep trudging on.

Thank you for all of your suggestions and support.
Jady

[Patze]

Hi Jady,

I'm sorry to hear about your mom's passing, and I realize that has to be making your symptoms so much worse.  Sending you some giant gentle

( ( ( ( ( H U G S ) ) ) ) )

and hoping that you feel better soon.

I understand about not wanting to keep seeking medical help, it can be so daunting sometimes.  No worries about being sero negative in these parts (the queen over here ) as some people will eventually convert while others never do.

Hang in there, okay?

Take care of yourself -

Patze