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SS diagnoses, Some advice please

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Old 08-05-2011, 08:40 AM   #1
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)

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Old 08-09-2011, 11:19 PM   #2
Join Date: Jul 2011
Location: Larimore, ND United States
Posts: 4
hamiltonND HB User
Re: SS diagnoses, Some advice please 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..

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Old 09-03-2011, 09:19 AM   #3
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

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Old 09-03-2011, 07:56 PM   #4
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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

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