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Could this be Sjogren's?

Q: Hi

I have been experiencing symptoms for a while now - I have recently seen a new doctor who thinks I may have SS & am waiting an appointment with a Rheumatologist, I am from Uk,  female & 46 years.

I had Glandular Fever (mono) aged 38.  2 1/2 yrs ago I got Lymes Disease & was prescribed Doxycycline  for 14 days. Symptoms:

Dry mouth for 2 years - mouth is like a piece of rock in the mornings, surface of tongue is cracked & occasionally bleeds - I have to have fluid before I event attempt to eat otherwise I have difficulty swallowing.  I also take water to bed to sip through the night.  I have regular mouth ulcers & blisters on the tongue.
I can no longer eat spicy food because the pain is unbearable & has left me in tears on occasions.  Doctor has prescribed me artificial saliva which helps for a short time. At times I find it difficult to talk as mouth is so dry. On 2 or 3 occasions during the last 18 months the bit at the bottom of my under tongue
(just before it touches the gums) have swollen up & stayed that way for a few days.

Not sure I have dry eye, but I do feel like there's something in them & when I try to dig it out there's gungy stringy stuff, eyes feel tired, sore & itchy, but they also water & I can still cry.  They have been like this for probably 4 or 5 years now.

Cognitive impairment - short term memory is shocking.  I struggle to get words out, it?s like they are on the tip of my tongue but not even my brain knows the word & I have to just sit & stare until the words come back  I would say this started 18 months to 2 years ago.  I can become quite emotional as Even though I
am on antidepressants.

Fatigue-  was totally exhausted & drained during my GFr episode & had to take 2 1/2 months off work.  Then it came back when I had Lyme's Disease & I remember sleeping 10 hours a day for a week.  But I feel it?s getting worse now & affecting my life - I avoid social events because I am just too tired, I spend
all day working out what time I can go to sleep, can I have a day in bed etc - I used to love exercising - but now the walk to work wipes me out.  I have a few times practically fallen asleep at work.

Tremors - my fingers tremor they have a life of their own, on bad days it affects writing & painting my nails.  Had this for 6 months approx.

Tinnitus ?For 1 year.

Dry skin ? Had quite a large patch of eczema recently - lasted 5 months around my neck & down to my chest.  I treated it with steroid cream & emollient but it took a long time to clear up.  In the last week I have noticed that the skin on
my finger knuckles is very dry & one of them the skin has split - I use handcream after I wash my hands & again at night before bed.

Dizziness - for the last 6-8 weeks I have been experiencing dizziness & feeling like I am going to pass out -mainly when I get up but not always straight away - I have to stand still & hold onto something & just close my eyes until it passes, if I open my eyes everything is blurry & fuzzed out & I feel sick.

Cough - I have a persistent hacking cough for about 1 year, my old doctor said it was my asthma playing up & would prescribed steroids which would help but then after a while it would come back. I also get a hoarseness about my voice that comes & goes.

Pain - I have degenerative spinal disease so I am in pain with my back in anycase but I will regularly get shooting pains in my hands & legs.  My elbows are very sore to touch & have been like that for about 4 years - I am told its golfers elbow, occasionally they fill with & during these times they are red & hot to touch then the fluid goes & they are just back to sore to touch.

Swelling - last year I noticed a swelling at the point where ear & jaw meet, it lasted 10 days, but if I touch that area it feels a little harder than the other side & makes me feel weird at the back of my throat (left side) not experienced this on right side.  The glands in my neck (at the point where it starts to become the chin) are regularly swelling & aching - but have been since my GF
days).  A lymph node in my neck & behind my ear is permanently swollen (not a lot, but both will swell more if I am under the weather with cold or flu).  I noticed the right side of my tongue was swollen & twice the right side of my face has swollen for no reason - both times swelled quite quickly & last for about a week.

I have cold hands and feet but a very warm torso and have night sweats (I assumed it was the start of the menopause).

Tests - I have had blood tests, liver, kidney, thyroid, FBC are all normal. It?s shown that I am pre-diabetic.  & my white cells were elevated (Eosinophils I think) which was indicative of allergies - which I do have - but I have no idea if these play a role in SS.  I am waiting for the results of     ANA, CRP, RF
which I should get next week.

Do you think that my GP is right and it sounds like SS - is there anything proactive I can do to help myself ahead of my appointment with the Rheumatologist, like eating or avoiding certain foods etc.

Thank you.

Thanks.

A:  Could be Sjogren's or a few other things are in the Differential Diagnosis. Grateful your GP considered the diagnosis and referred you to a Rheumatologist. The Lab studies SSA/SSB antibodies, ANA are important next steps. If the SSA/B are negative, a minor salivary gland biopsy may be recommended.

The first step is to receive a diagnosis or at least the best possible hypothesis of what is causing the symptoms. Once this is done, then a plan of action and management can occur.

Soooo I don't have a suggestion of what one could do at this point in the journey.

dr c

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1 Comment   »

  • Melissa says:

    I was diagnosed with Sjogrens recently with negative ANA. Your symptoms ring very familiar. I detoxed my health and beauty routine eliminating polyethylene (aka PET) and propylene glycol(aka PPG and PEG), it helped tremendously. Have also determined that I need to reduce sugar intake. Have been on Plaquenil for 1 week with relatively positive results so far. Lessened fatigue and allergies.

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