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Not sure if this could be Sjogrens

Posted , 5 users are following.

lizzie29765
lizzie29765

Hi

I have been back and forth to GPs for the last few years. Was diagnosed as hypothyroid 18 years ago but never had the antibody test.

Fatigue has been the overwhelming concern and migraine. Have propranolol which helps with migraine, went to audiologist as dizziness and hearing loss, BPPV and low level hearing loss the cause. Still have episodes of dizziness. Reduced sense of smell, currently being assessed for asthma.

Reduced sense of smell. Flares of neck/ shoulder pain, hand pain and sore knees. Unable to wear contact lenses for last six months have drops prescribed by optician, struggle with sunlight as my eyes hurt, really really dry eyes, blepharitis, itchy scalp.

I also have problems with low iron and B12. On injections for B12. Negative for pernicious anaemia or celiac.

My temperature control is shot with even the smallest amount of activity I sweat but 10minutes later freezing. GP offered clonidine but blood tests show my hormones are ok. I feel that I am collecting symptoms with no overall way of knowing what is going on.

With this recent flare since Christmas I am drinking all the time as my mouth feels so dry and can't eat without having a drink so I can swallow. Have asked for GP for referral about 4months ago when he said it was part of ageing- I am 48!!. That was when he gave me clonidine which have not taken as started with wheeze and bronchitis at same time. 

Reading posts on here I am not alone but have wondered about Sjogrens as read about dizziness, migraine and respiratory symptoms plus malabsorption problems which would explain so much rather than just a collection of symptoms.

Sorry the post is so long and any advice would be wonderful.

Thanks

Lizzie

0 likes, 4 replies

4 Replies

  • Tumtum1963
    Tumtum1963 lizzie29765

    Posted

    Please print off a reliable (BSSA if UK - SSF if US but both reputable) and relevant list of Sjögren’s symptoms with facts on the length of time it takes most to receive a diagnosis. Take this, with your symptoms highlighted, back to your GP. Look them right in the eye and tell them that you are already diagnosed and treated for one autoimmune condition and now have many of the symptoms of another. You feel it is perfectly reasonable to request that your full panel of antibodies are taken along with inflammatory markers, PV or ESR and CRP. Even if these yield no answers you still feel your symptoms warrant further investigation by a consultant rheumatologist. Don’t take no for an answer please! Best of luck x

    • lizzie29765
      lizzie29765 Tumtum1963

      Posted

      Thanks for your reply. Have not spoken to GP about Sjogrens as waiting to find out ifcould be asthmatic and doing peak flow reversibility. 

      Think with a lot of autoimmune conditions that can have symptoms before the blood results clarify. Can see why is takes so long for diagnosis or treatment? Though my B12 was borderline And I was not absorbing from my diet I had to wait until it dropped below the level before they would treat. Will find the information you said and book a double appointment with GP to discuss. Thanks

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