It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Sjögren's Syndrome Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 08-05-2011, 08:40 AM   #1
Newbie
(female)
 
Join Date: Apr 2011
Location: Ireland
Posts: 4
Mum2boys HB User
SS diagnoses, Some advice please

Hi there,

I was diagnosed with SS today by a consultant rheumatologist. Thing is, he never took any bloodwork, only went on the bloodwork my Gp took 3 mths ago which showed a negative ANA. All he did was perform the Schirmer Test (put paper folds into my eyes for a few minutes to measure tear amount)

Ive been having many symptoms for the last year and bit including fatigue, joint and muscle pain, eye pain, neuropathy, headaches, rashes, muscle spasms, frequent urination, heart palpitations and chest pain.

This was my first consultation with a rheumatologist. My Gp took my bloods 3mths ago and tested me for Lupus which was negative. I presume this was the Ana test. He told me that I do not have Lupus, RA or Fibromyalgia. He said he could not find any inflammation and the tender point ruled out Fibro. He said my eyes are quite dry and this is possibly whats causing my other symptoms. He gave me a diagnosis of SS and said he was referring me for a bone scan to rule out inflammation due to arthiritis. He prescribed me Vimovo which is an anti arthritic drug and Hydromellose Eye drops for then dry eyes.

Im very confused as to why he could give me such a fast diagnoses without a biopsy or positive bloodwork? I really have my doubts, I think ive been misdiagnosed. My main problems are the muscle and joint pain and fatigue. The dry eyes and mouth are minor.

Because this is a systemic disease, should I not have been prescribed something to slow down the disease process? like plaqenil?

Any feedback would be great.....thanks (Im 28)

 
Reply With Quote
Sponsors Lightbulb
   
Old 08-09-2011, 11:19 PM   #2
Newbie
(female)
 
Join Date: Jul 2011
Location: Larimore, ND United States
Posts: 4
hamiltonND HB User
Re: SS diagnoses, Some advice please

wow....im sorry you had that kind of luck with your rheumy...mine was amazing and so very through he ran like 11 labs and my gp doc had already ran half of the tests he did. he also did a very through physical exam too and explained everything about sjogrens and did that shimmers eye test again even though that had been done by my gp doctor.... I would maybe look at seeing a different rheumy or go back in and ask more questions. my rheumy put me on salagen tablets for the saliva issue and my gp started me on the plaqenal to help with my itching but that was in referral from my rheumy of putting me on that too. I guess in my eyes i would get a different opinion for sure..

 
Reply With Quote
Old 09-03-2011, 09:19 AM   #3
Newbie
(female)
 
Join Date: Sep 2011
Location: Hadley, Pa. USA
Posts: 5
loisstal HB User
Re: SS diagnoses, Some advice please

I have SS also and I noticed you mentioned itching. Does that go with SS? I have a lot of itching but didn't know what was causing it. You never know if it is a reaction to some medicine or from the disease. My doctor has me on Hydroxychor. My white blood count is low, 3.1 whereas it should be 4.8. Lois

 
Reply With Quote
Old 09-03-2011, 07:56 PM   #4
Senior Veteran
(female)
 
Join Date: May 2007
Location: Calif, USA
Posts: 1,530
Mel52 HB UserMel52 HB UserMel52 HB UserMel52 HB UserMel52 HB UserMel52 HB UserMel52 HB UserMel52 HB UserMel52 HB User
Re: SS diagnoses, Some advice please

I have ALL the symptoms you listed plus reynauds and fibromyalgia. I was positive on the schirmer test, a malar rash was noted but negative on all blood work. That rheumotologist had said I had a mixed connective tissue disease. He is a very well known and respected rheumotologist. We switched insurances and I was fine for years except for bouts of the fibromyalgia acting up.A few years ago all the symptoms have hit me so hard. The cramping is horrible. The last dr told me I only had sicca syndrome because my blood work was negative.
However, I have learned a lip biopsy is a sure way to diagnose it, IF the dr doing it does it correctly. Apparently ANA and the SSB (whatever that blood test is) can be negative too and you can still have it. I have read some people do not have the dry mouth or eyes. The itching skin can be due to the dryness.
I agree with the other posters, I would ask more questions or go for a second opinion. good luck

 
Reply With Quote
Reply Reply

Similar Threads
Thread Thread Starter Board Replies Last Post
Any advice about Sjogrens and surgery? Angie10 Sjögren's Syndrome 1 01-05-2012 01:58 AM
Desperately Need Advice thedancedk Sjögren's Syndrome 1 09-08-2011 12:59 PM
Dry eye plugs/ Need advice Oleander53 Sjögren's Syndrome 2 03-23-2010 12:21 PM
Please help me Madison104 Sjögren's Syndrome 18 03-15-2010 04:09 AM
looking for advice gcbpgh Sjögren's Syndrome 2 12-27-2009 11:40 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



boobootwo (8), luca689 (7), quincy (4), ladybud (4), Knot (3), dltt48 (3), owllover99 (3), bluelakelady (2), Angie10 (2), surreygal (2)

Site Wide Totals

teteri66 (1162), MSJayhawk (992), Apollo123 (890), Titchou (827), janewhite1 (823), Gabriel (757), ladybud (744), sammy64 (666), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 04:51 AM.



Site owned and operated by HealthBoards.com™
Terms of Use © 1998-2014 HealthBoards.com™ All rights reserved.
Do not copy or redistribute in any form!