help me: do u have these

[sikalot]

hello, i am extremely depressed. i spoke to my doc yesterday and told him my opt doc is suggesting sjs he said i have no other symptoms of sjs except for dry eyes he said my other symptoms are not sjs. here r my symptoms can everyone count the number of similar symptoms and post them and if u have any comments about any of my symptoms i would love to hear them. also how can a flare last? i have been sick since march.

symptom:
dry eyes 0 on shirmirs test
stomach pain endoscopy showed inflamation
extreme sensitivity to light (very bad)
head pain sharp shooting on the top
chest pain above my breasts i can pin point the pain
high white count 12,000-16,000
high c-reactive protein 9.33-18.88
occasional shooting pains in arms and legs
a bit of dry mouth mostly in the mornings not extremely dry
extreme fatigue i am unable to get anything done through out the day
ice cold feet
minor abnormality on mri unkown cause
i test neg for any antibodies so my doc doesn't think further testing is required. i have already been through many docs this one i drive 4 hours to get there because their team is soppossed 2 b good. the doc and specialists all say there is something going on they arent sure what yet

does this sound like sjs to u or something else to you

[cport]

Hi there.
Sjogren's has many symptoms. Some people have one or two others end up with a list as long as your arm and more. I have almost all the symptoms you have listed and more. I also came back negative to the ANA antibodies and the only thing that came back positive was an anti RO antibody. It does sound as though you have a possibility of it being sjogren's. Hope this helps a little bit xxx

[missy1306]

Hi Cport, so sorry to hear about your frustration. I have never test positive on the ANA test, my positive was the SSA. Have you been to a rheumatologisst yet? I am guessing that is who said you have something going on but they were not sure what. I hope you get some answers soon. What I have found from this and other sights is that everyone's sjogren's journey is so different. I definitely have a few of the symptoms you have but not all. Keep going until you get someone who will listen. I wish you the best.

[tomsmom]

I have many of the same things you listed.  I do however have a positive ANA and SS-B not SS-A.  I had the endoscopy and it showed a hiatal hernia and inflamation-- I'm negative for gluten intolerance.  I even tried being gluten free for a few months but it didn't help me.  The chest pain above the breasts is interesting.  I have it as well but I figured it was strained muscles from lifting my babies everywhere.  I had cardiac tests but am told my heart is in great shape.  I hope you see a rheumatologist soon.  I started taking plaquenil three weeks ago and I'm praying it kicks in soon.  I hate to hear you're depressed.  I spent many days crying the last few months because I'm so tired of being tired and still having so much to do. I agree with missy, please find someone who'll listen and start treatment.  I hope you feel better soon!

[Patze]

Hi sikalot,

I'm sorry that the doctors have not been able to give you an answer.  It's frustrating to not know, but sometimes you just won't get one for a while.  Are any of your doctors treating your symptoms?  

You probably have already, but have you tried a major medical facility by chance?  Or a teaching hospital?  A lot of cutting edge doctors can be found there.

I see your symptom list, and have you had your thyroid checked lately?  If you have, what did your doctor say about it?

Hang in there and take care -

Patze

[trector1955]

Hello,
     I wanted to comment on the sore chest. I have that also as my Mom and My son. It is inflammation of the ling to the wall of your chest is what I was told. I hope that helps some I have lots of the same stuff but I have been dyx. with Sjogrens I also have fibermyalgia.
Thanks Theresa

[cport]

although i was ANA neg i have been diagnosed with sjogren's as i had the anti RO antibodies.  this is only found in lupus or sjogren's. i was negative to lupus so diagnosed on the antii RO and the symptoms. i'm having tonsils out on tuesday so while i'm under they're doing a lip byopsy just to be positive. so sikalot just cause you were ANA neg don't just leave it at that as it doesn't mean you don't have sjogren's keep persuing it xxx

[kathyl]

I agree about the chest pain maybe being pleuritis (inflammation of the lining of the lungs).  It hurts, I can also point to the exact spot. It hurts on the inside not the outside.  It is a significant symptom that happens in SJS and lupus and one used to help make a diagnosis.  I have many of your symptoms and others too.  I am extremely sensitive to light, I get migraines and nausea and tiredness.  From what I have read I did not think people with SJS were required to have antibodies for a diagnosis.  It is nice if you do then you maybe don't have to get a lip biopsy but I had read that the lip biopsy was used to diagnosis in many cases.  I had a high ANA and positive SSB and I was still told by my doctor that I was depressed.  (I was depressed because I did not feel well).  So I went to another doctor (Rheumatologist) who knew a lot about SJS and he made a diagnosis right away.  Good luck.

[Patze]

Hi cport,

Good luck on the tonsillectomy and the lip biopsy on Tuesday!


Patze