Possible Sjogrens

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mysteriousmillie
New Member


Date Joined May 2017
Total Posts : 3
   Posted 5/3/2017 8:37 AM (GMT -7)   
Hi

I have been experiencing symptoms for a while now - I have recently moved & saw a new doctor who thinks I might have Sjogrens Syndrome & am waiting an appointment with a Rheumatologist, I am from the Uk, female & 46 years old.

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

symptoms:

Dry mouth started about 2 years ago with oral & vaginal thrush - 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 get very cold hands and feet then all of a sudden, I will go hot and feel like I have a fever then it disappears - I also get night sweats that are steadily getting worse - it seems my torso gets over heated whilst my hands and feet stay cold - I guess that could be the start of the menopause though.

numbness and tingling in my right hand - little finger and that side of the hand down to the wrist.


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.

I don't know if any of these symptoms sounds familiar to those with SS - a friend told me that there might be a connection between GF, Lymes & SS. But I thought I would talk to you guys whilst waiting for an appointment.

Thanks.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7519
   Posted 5/3/2017 10:26 AM (GMT -7)   
Wow, it certainly sounds as if you have a lot going on! Hopefully you will be able to meet with a rheumatologist sooner rather than later.

I don't know if Biotene products are available there, but they have a line of mouthwash, toothpaste & other products that are very helpful in easing the pain & symptoms of dry mouth.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

mysteriousmillie
New Member


Date Joined May 2017
Total Posts : 3
   Posted 5/4/2017 12:53 AM (GMT -7)   
Hi, yes my doctor has given me the biotene gel on prescription, it certainly does help, but not for long, but I have several tubes of it - one in the bedroom, one in kitchen, one in bag LOL!

dorri
Veteran Member


Date Joined Feb 2003
Total Posts : 1944
   Posted 7/20/2017 10:36 PM (GMT -7)   
I have much of what you have, severe dry eyes, only occasional dry mouth but spicy food either itches or burns my mouth, sore tongue, dry skin, tinnitus, pain in the back of my jaws, hearing loss, cognitive impairment The Eye doctor thinks I have sjorgrens after extensive testing and treatment for my eyes. I already have another immune condition, so I didn't bother going in for the extra testing to find out for sure.

mysteriousmillie
New Member


Date Joined May 2017
Total Posts : 3
   Posted 7/21/2017 1:58 AM (GMT -7)   
Hi

Well since I posted I am seen a rheumy but the GP before that did a load of blood tests and the results of those indicate it probably isn't Sjogrens which is good. I am now having a load more blood tests, echocardiogram, scan on my saliva glands, chest and elbow extra. he was very thorough. The eye test for Sjogrens was a definite negative, my eyes were streaming within seconds. So currently the consultant is wondering if its Chronic Lymes Disease ( I was disagnosed with Lymes 2 1/2 years ago) but he is also testing me for the autoimmune disease my mum has - dermamayomotosis (SP?) as its quite rare and there isn't that much research into it to categorically say whether its hereditary or not. He doesn't think the essential tremor in my hands is connected and was thinking about referring me to a neurologist. Hopefully things will become clearer when I have my next appointment with him at the end of August.

Thanks .

Diamond20_UK
Regular Member


Date Joined Jul 2011
Total Posts : 60
   Posted 7/21/2017 6:41 AM (GMT -7)   
Hello mysteriousmillie,

I'm from the UK also smile

What you first put I actually thought you did have Sjogren's as I've had it a good while and your symptoms are exactly to what I go through day in and day out.

I really hope it's nothing to serious and it can be dealt with properly...pleases update we with your results.

Hugs Terry
Diagnosed with MCTD (Mixed connective tissue disease)

Lupus SLE/SCLE/Secondary Sjogren’s syndrome/Raynaud's phenomenon/Scleroderma/psoriasis/
Antiphospholipid Syndrome/Peripheral neuropathy/Pernicious Anaemia/Osteoarthritis/Chronic IBS/
Muscle Atrophy/COPD/Hypothyroidism//Epilepsy/Bipolar-Manic depression-OCD

Diamond20_UK
Regular Member


Date Joined Jul 2011
Total Posts : 60
   Posted 7/21/2017 9:59 PM (GMT -7)   
mysteriousmillie people can still have sjogrens even though tests come back negative and yours are so like what I have and also have had to adjust to...lip biopsy can actually tell if you have it otherwise.

Here's a discussion link from 2014 from a member on here with negative blood work but with sjogren's symptoms.

www.healingwell.com/community/default.aspx?f=12&m=3057335
Diagnosed with MCTD (Mixed connective tissue disease)

Lupus SLE/SCLE/Secondary Sjogren’s syndrome/Raynaud's phenomenon/Scleroderma/psoriasis/
Antiphospholipid Syndrome/Peripheral neuropathy/Pernicious Anaemia/Osteoarthritis/Chronic IBS/
Muscle Atrophy/COPD/Hypothyroidism//Epilepsy/Bipolar-Manic depression-OCD

Kit04
New Member


Date Joined Sep 2017
Total Posts : 3
   Posted 9/11/2017 6:50 PM (GMT -7)   
I've been recently diagnosed with Sjogren's through lip biobsy. All my blood work came back negative but I had swollen glands for over 6 months. Feet and hands swell intermittent and was diagnosed with bursitis, GERDS, IBS, and carpel tunnel.

I don't have dry mouth but dry eyes. I think I've been caught early, but I'm wondering if anyone has suggestions for fatigue? I was just put on plaquuenil today by rheumatologist. I know it takes a few months to work, but any suggestions in the meantime?

Also like to know if many of you have only been confirmed by lip biopsy? It seems odd that blood test are all negative, but I have notice they have all moved close to upper normal range.

Thanks for letting me join!
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