Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: Justdave on May 09, 2010, 05:21:20 AM

Title: You would think you would get the dry eyes and mouth first.
Post by: Justdave on May 09, 2010, 05:21:20 AM
Not me, that was one of the last things to show up.

My order went...

Nuerological - tremmors, twitching, tingling
Random Joint pain
Fevers, fatigue
Nuerological - Speech, memory, cog thought
Vasculitis skin rashes (didn't know what they were back then)
Chest pain, heart pain, adomin pain (esp on the right side)
Did I mention Fatigue... Lots and lots of Fatigue

So I went to tons of doctors for this stuff, all the blood work, MRI,
Catscans, spinal taps, you name it. Nutten.

Doc's couldn't find a thing..I felt like saying.. but..but.. but..nevermind mind.

Then.... in strolls

Lung issues, catscan enlarged Lyphnodes and lung nodules
More tests, High ANA,  biopsy finds vasculits, they figure
autoimmune and point me to some Rhuemys who could pounce
and help me out.

Then the dry eyes and mouth Show up to the party, being the hallmark symptoms
it would have been nice if it had started with them.

I spent years and years feeling like a fruit cake. Dreading walking into yet another doctors
office to hear it might be stress or something.

Maybe if I had strated like everyone else, I would have gotten the correct DX earlier. The Rhuemys figured it
out, but the standard Docs were puzzled for quite a while.

I will say, now that I am being treated I am doing great, better than I have felt in a long time. With two exceptions... guess which two...

Dry eyes
Dry mouth

Am I the only one who did it backwards?
Title: Re: You would think you would get the dry eyes and mouth first.
Post by: beverley on May 09, 2010, 06:38:02 AM
Dear Dave,

I'm not sure that everyone starts with dry eyes, it's just that often you overlook some of the other symptoms like fatigue, or lack of concentration or memory loss, because you work in a stressful job, or you have other things like hayfever or migraines and you think they are all connected.  It is often extreme dry eyes that make you think 'hang on - perhaps there's something else going on here.'

It was painful, bloodshot, barely open eyes that my opthamologist picked up the SJS on, but when I think about it, I had other related symptoms (including gritty, itchy eyes) for years.  Part of it I had put down to pre menstrual syndrome and then menopause, but actually they were probably all to do with Sjogrens.

Title: Re: You would think you would get the dry eyes and mouth first.
Post by: Billydude on May 09, 2010, 07:59:59 AM
ME TOO DAVE.   I was worried the first couple of years thinking they had a wrong diagnosis but now two years after my diagnosis I'm now having the dry eyes and mouth and just recently showed positive ANA for the first time.   The Sjogrens expert at UCSF told me that it does effect men a little differently.
Title: Re: You would think you would get the dry eyes and mouth first.
Post by: DragonflyC on May 09, 2010, 08:00:12 AM
I think symptoms can come in any order.

Lung issues--pleurisy and air hunger--were my first symptoms.  Everything else came much later.  
Title: Re: You would think you would get the dry eyes and mouth first.
Post by: YYC_ Mommy on May 09, 2010, 08:07:49 AM
For me the dry eyes and mouth did not happen first either. I think that most of my other symptoms could be many things, the joint pain, fatigue, ringing ears, electrical shocks etc. I really did not even think of my dry eyes and mouth until my GP said I have Sjogren's and the hallmark symptoms are dry eyes and mouth. I then replied, no wonder I have not been able to wear my contacts for some time. I had just thought it was the dry weather or something. I really never thought to bring that up at my appointments as I had such "worse" problems.

I would agree as well that it is certainly different in everyone but it would be nice if everything came with some kind of manual or at least a GPS to lead our doctors to the right place.
Title: Re: You would think you would get the dry eyes and mouth first.
Post by: Scottietottie on May 09, 2010, 08:51:53 AM
Hi  :)

I was tested negative for MS about 20 years before the dry eyes and the dry mouth. Even now I wouldn't consider them predominant symptoms. The dry eyes and the dry mouth are the 'mild and manageable' part that information leaflets tend to spout. (I realise that for those with agonisingly dry eyes this is not the case - just speaking personally here)

The other stuff that goes along with SjS is worse - and I'm a 'mild case' as far as this forum goes.

Take care - Scottie  :)
Title: Re: You would think you would get the dry eyes and mouth first.
Post by: harlin on May 09, 2010, 10:09:50 AM
Hi Justdave
I started years ago with joint pain and they never could find a reason. A dr along time ago thought maybe it was SJS but was never diagnosed. For years I to have been to dr for pain and fatigue and no one could help me out. I have been to PT several times and always it makes me worse.

The dry eyes and dry mouth came this past year, then in May '09 I was finally diagnosed positive for SJS along with Reynolds, Fibro and Osteoarthritis. Lovely huh.

I have been feeling much better energy is up since taking Lyrica. Pain is better except my cronic pain in my neck and hip. I have had this for years.

Title: Re: You would think you would get the dry eyes and mouth first.
Post by: Shashi11962 on May 09, 2010, 10:30:05 AM
I haven't been diagnosed yet, though my doctor strongly suspects Sjogren's. But then, four years ago, my doctors also strongly suspected MS.

Like you, I started with neurological symptoms - fatigue, tremors, shooting nerve pain, etc. I then progressed to other stuff like GERD, joint pain, muscle pain, etc, but didn't get dry eyes or mouth until about a year ago. Now I have chronic parotitis, which is why my doctor suspects SJS.

Also, like you, I've had many MRIs, CT scans, LP, blood tests, etc., but other than messed up reflexes and an abnormal evoked potential in my left leg, everything has been normal. I've had doctors tell me it was stress, anxiety, or just give me a blank look and shrug their shoulders. I finally gave up even trying to find a diagnosis, until my ENT again suggested SJS. (She said the same thing last year.) The pieces all fit, but I guess we'll see. (I'm scheduled for a lip biopsy May 18.)
Title: Re: You would think you would get the dry eyes and mouth first.
Post by: Blue Kat on May 09, 2010, 01:54:56 PM
I don't have the dry eyes or mouth yet and I'm hoping against hope I never do.  Mine started with neurological and connective tissue pain and so far it's continuing that way...but worsening.  And of course as you said, the fatigue.  Lots of fatigue!  Crazy illness, isn't it? 
Title: Re: You would think you would get the dry eyes and mouth first.
Post by: Carolina on May 09, 2010, 03:06:31 PM
YEAH, Dave.

I read a lot of research, and it turns out that the typical Sicca stuff of Sjogren's often shows up later on.

For me, the Dry Eye Dry Mouth was the thing that was first diagnosed.    And I didn't even know that my numb legs and pains and stuff could be diagnosed or were something to be concerned about until a neurologist picked them up when I went to see him about my constant headaches.

After a couple of years of UTIs, the interstitial cystitis was picked up by my gynecologist.   But all of that followed the dry eye/dry mouth thing.

However, I had a LOT of pain from my osteoarthritis, and that could well have been from early pSjS as well.  And as for fatigue and depression.......doesn't EVERYONE have those?  LOL

But after I read the research, it's pretty clear that there are lots of paths to the fun and games of our autoimmune stuff.

Title: Re: You would think you would get the dry eyes and mouth first.
Post by: Sheltiemom on May 09, 2010, 03:30:40 PM

I'm somebody who had neuropathy actually show up first, although not by as much as you did.  If you haven't read the CNS article that you can click on the Sjogrensworld Home Page by Dr. Stephen Mandel, that man put it ALL out there regarding Sjogren's and all the things that piggyback on it.

He mentions LOTS of neuro and other problems.  He really understands this disease. 

Have to say that NONE of my neurologists have (four of them - 2 at one major medical center and 2 at the other in our metro area) really understand all of the Sjogren's neuro stuff.  I plan to mail Mandel's article to all four of them.  If I ever get into real trouble (other than the sensory neuropathy) with this thing, I'm heading for Johns Hopkins, for which my insurance won't pay.  I don't care - whatever it takes.

Best wishes,

Title: Re: You would think you would get the dry eyes and mouth first.
Post by: rose24 on May 09, 2010, 04:16:10 PM
OH my heavens! 
I always told the docs I may indeed be a fruitcake, but that is in conjunction with what ever else is wrong with me. 

My first year was general misery, nausea, cog. issues and episodes.  My kids call it the "Mommy can't Talk Time"
The second year was more defined: fever, chills,  pain, nausea, cog.  episodes and severe weight loss.  Then anemia, and iron loss, lots of pain.
I had congestive heart failure in 2004 8 days after my third daughter was born.  Now I have fluctuating hypertension and chronic tachycardia

Lots of psych referals. I was at Mayo twice.  Never got into to see Rheum. Wait was too long. 

Actually my very first symptoms were vascular rash, livedo reticularis and severe facial flushing.

Thought it was a carcinoid type cancer, but couldn't find the tumors, though I do have gastric ulcers not caused by the pylori bacteria 

I have always been ana neg.   Then finally it was there SSA positive.  Still they were reluctant, going with a fibro based treatment (that was not working) then I remembered an appointment a year prior with an optomotrist neurologist who was evaluating flashes, etc.  He said I was o.k. but at the very end sort of by the way, your eyes are dry.  So I went back and asked for the schirmer and it was a 1. 

So, I started on plaquinil 2 days later. 

So, no.  They dry eyes and mouth thing were def. the last thing to emerge.
Title: Re: You would think you would get the dry eyes and mouth first.
Post by: mink on May 09, 2010, 07:16:40 PM
Hi JustDave
   I had A LOT of fatigue which they said is asthma even tho I was never asthmatic, then i started getting severe joint pain to the point of having to quit my job  because i could barely move let alone walk for almost 6 mths. The dry mouth and eyes came after 3mths into the joint pain.
   I guess it's different for everyone. Best of luck :)
Title: Re: You would think you would get the dry eyes and mouth first.
Post by: selavy59 on May 10, 2010, 10:17:28 AM
Took nearly seventeen years for the dry mouth to become a real problem. Dry eyes are not so bad and that is after 19 years with Sjogren's. My first symptoms were hip pain, a sudden drop in fitness levels followed by parotid swelling, hearing problems, fatigue etc etc.