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Possible Sjorgens????

Posted , 8 users are following.

shirley43769
shirley43769

Hi all I am new here and just looking for someone that is maybe in the same boat. I will start at the start! I went for a routine eye test in September 2016 and while waiting for my fairly weak prescription glasses to come home I noticed my eyes were twitching a bit and wanting to close, I put this down to having'rugby ball' shaped lenses and have always scrunched my eyes up a bit to read etc. Anyway this got worse as time went on and went back to the optician and got drops for dry eyes. This became an almost weekly occurrence and it was discovered after a few different lots of drops I am allergic to preservatives in the drops and got preservative free ones ever since. After a few trips to the optician I thought maybe the doctor would be able to offer some other help or advice. After a string of doctors giving me the helpful advice of 'stop touching your eyes, you are doing it to yourself', here's some antihistamines and try these drops the optician finally referred me to an eye specialist. I was given an urgent referral, but because of living in the Scottish islands, it was two months before I was seen to be told 'theres nothing wrong with your eyes, don't worry about it it will get better' and he gave me yet more drops. At this point I was having to hold my eyes open with my hands and had been signed off work for two months. I have had two lots of blood tests that have come back negative for thyroid disease and any auto immune problems. I have been referred to a rheumatologist but again because of where I live I will have wait at least another two months before I get seen. For a while I was just thinking it was a dry eyes thing but when I wrote a list of every tiny niggle i wasn't so sure! Some of the things I have are

Restless legs and arms

Feeling sick after eating

Numbness in some fingers

Dry ears, mouth and throat and of course eyes

A choking sensation to name a few.

I know I am fairly early in the symptoms at 9 months compared to some of your experiences but I am past my wit's end already 😑 I think the waiting without actually getting any better is the worst! Thanks for reading 😃

2 likes, 58 replies

58 Replies

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  • jane75220
    jane75220 shirley43769

    Posted

    Has anyone suggested a scan of your thyroid  to rule out nodules?
    • shirley43769
      shirley43769

      Posted

      Oops pushed wrong button! But really nothing else than the blood tests have been mentioned. I do hope the rheumatologist will be doing plenty of tests, they are in contact with my Dr so hoping they have a good background info when I do eventually see them!
  • Megheart
    Megheart shirley43769

    Posted

    Obviously we do not know all the facts and findings of your symptoms and tests but this is an all too common story.... sadly many of us here have experienced the dismissive and tantamount to negligent attitudes of some medical professionals.

    The fact that blood tests have come back negative, especially as in the case of certain autoimmune conditions, such as Sjögrens Syndrome, means nothing. Even assuming that the correct tests have been done it can take years before they show up positive.

    In Sjögrens Syndrome a percentage of people also experience neuropathic symptoms. This may include peripheral neuropathy (numbness, tingling, buzzing in the extremities - feet, legs or arms), or autonomic neuropathy like balance issues, temperature instability or poor stomach emptying after eating. This poor stomach emptying produces nausea or feeling sick after eating as you say, and sometimes early satiety which is feeling very full after just a few mouthfuls of food.

    These are distressing symptoms, especially when you are being dismissed because all tests are negative.

    Keep hanging in there and eventually something will reveal itself.

     

    • shirley43769
      shirley43769 Megheart

      Posted

      Hi I'm afraid I'm not really up to blood readings etc I guess as mine have come back negative I have no experience of what it all means. The Dr I am seeing now is very good and explains things well and has made it quite clear that the blood tests are not a definitive answer and the drops and spray are for comfort and more than likely not going to be a cure.

      The first blood test I got was a general one checking blood count, thyroid disease and any auto immune problems. The second was ENA, my blood was flown away the second time and I have heard that flying can change things. Thank you, hanging on for that better day 😃

  • brenwag68
    brenwag68 shirley43769

    Posted

    Hi Shirley,

    I know how you are feeling, it is frustrating... I too seem to develop something new on a regular basis that the doctor has no clue about...

    I have problems with my eyes as well (not sure it is quite the same as yours) I have extremely dry eyes, they get so dry that the skin around my eyes swells. I also have eye twitch, which is so irritating 😠... my eyes pain most of the time...

    I also have leg, feet & hand pain, with numbness & restless leg syndrome. (Diagnosed with Raynauds & Neuropathy)...

    I get extremely nauseous after eating, especially after pastas, breads & dairy. I eat just small amounts of food at a time (Diagnosed as being Lactose Intolerant)...

    I have dry inner ear (pains when I am in wind or air conditioners (air conditioners are a killer)...

    I have extremely dry mouth, I have been losing teeth. Mu gums have receeded so badly that a few of my front teeth wiggle back in forth. I know I will need to lose them & I was thinking of getting implants but I heard from some on this forum that it may not work because of the dryness, so I am not sure what to do... 

    I too have many more symptoms...

    I take Pilocarpine for dryness, Bioprene mouth wash, Restore for my eyes & ear drops. Not great but helps a little. 

    I was wondering, have you ever been tested for Neuropathy or Raynauds?

    I hope this helps... Take care 😊

     

    • shirley43769
      shirley43769 brenwag68

      Posted

      Hi my goodness you have some time of it, I can't say I have as much pain as you do, my eyes can burn at times if they start watering and get aches in my hips and ankles at times. My eyes are the major issue for most part. I haven't had any other tests apart from two blood tests. Thank you, take care too 😃

  • dryguy
    dryguy shirley43769

    Posted

    Totally agree with emgaheart.

    Blood test in Sjogrens are pointless as 50% never show any "abnormal" results based on current limited diagnostics. !0-20% are also -ve for lip biopsy the so calle golds statndard.  I am admin for sever al very large Sfogrens groups and about 1/2 of members are negative and therefore told nothung wrong despite severe and obvious clinical Sjogrens symptms, The BSSA are a complete waste of time as are the 5 "top" SS specialists are criminal useless and will not diagnose unless you test +ve.

    • jane75220
      jane75220 dryguy

      Posted

      Hi brenwag,dryeye,shirley,megheart,

      You have stated all the things that have happened to me. I am fed up with being ill and in pain. Ihavea multinodular goitre, low TSH, TPOAS 35 , thyroglobulin abs 5. T4 16.5, iron of 3.5. I have been taking B12 supplements so B12 blood test skewed. Ferraatin index was 5 well below range.

      ​I alsohave vit Ddeficiency was severely deficient at 9 mmols. Had to go  privately toget Vit D test done!!

      I also have dry eye syndromwith concretions and for several days have had a headache each morning which takes hours to go.

      ​My question is what is the treatment for SS ?

      Sorry for the long posting.

      Thank you

      ​Jane xxx

    • brenwag68
      brenwag68 jane75220

      Posted

      Hi all,

      It is true, blood work is not a diagnosis.. at times my blood work shows sjogrens & multiple autoimmune diseases, then at times my blood work is fine.. this is what happens with autoimmune diseases, that is why it is so hard to treat... I also have undifferentiated connective tissue disease (Lupus like symptoms)... (JANE75220)  really in my opinion there is no real treatment, there are things you can take to help (prescribed) such as pilocarpine (dryness) & amitriptyline (pain / sleep) & (otc) such as restore & replenish (dry eyes), Biotene (dry mouth), ear drops & otc pain meds (I have tried gabapentin (did not work for me but others have had good results) unfortunately autoimmune disease is a horrible, incurable disease...rest is an important key to feeling better... be well 🙂

    • shirley43769
      shirley43769 dryguy

      Posted

      Hi as odd as it sounds I am scared of always getting negative results as I don't want to be stuck in this odd limbo way of life, even though I'm not keen on being diagnosed either. Catch 22 I guess. I had lost a lot of faith in the professionals who are meant to be there to help but seemed they couldn't care less. Seems to be a common theme.

    • shirley43769
      shirley43769 jane75220

      Posted

      Hi you sound like you have a tough time of it too. I'm afraid I can't help you with what the treatment is. Have you thought about a daith piercing for your headaches? I had both ears done and it stopped my migraines and constant full headaches. If the piercing isn't for you, I found rubbing the cartilage inside the top of my ears helped ease the headaches.

    • brenwag68
      brenwag68 shirley43769

      Posted

      Hi Shirley,

      does daith piercing really work? Do you have to pierce both ears? Where did you have it done? I have horrible migraines, since I was early teens...

    • shirley43769
      shirley43769 brenwag68

      Posted

      Hi Bren

      I had it done in march 2016 and have only had the start of two migraines that a big drink of water shifted. I had both ears done as my migraines weren't fussy on what side they affected. I got them done at a local piercer, I know it doesn't work for everyone thankfully it has for me as I was getting them days apart and the doctor wouldn't give me anything to help with them I was just told to keep taking whatever painkillers I had at home.

      Hope this helps you a bit 😃

    • jane75220
      jane75220 shirley43769

      Posted

      Hi Bren and Shirley Sounds like the ear percing did the same job as acupuncture!!
    • shirley43769
      shirley43769 jane75220

      Posted

      Hi Jane

      Yes I think it is along the lines of acupuncture, just a more permanent way of doing it!

    • brenwag68
      brenwag68 shirley43769

      Posted

      Hi Shirley thanks for the tip, I am really going to look into it... my migraines have been awful lately... thanks again & take care of yourself...

    • brenwag68
      brenwag68 shirley43769

      Posted

      Hi Shirley,

      one other question about the daith piercing, does it matter what gauge you get pierced? Thanks a lot 😊

    • brenwag68
      brenwag68 shirley43769

      Posted

      Hi Shirley,

      I asked earlier what gauge for the daith piercing? I noticed your message had been deleted, not sure why?!?!? Does it matter the gauge or is it just the fact you have the piercings that helps? Thanks so much... take care😊

    • shirley43769
      shirley43769 brenwag68

      Posted

      Hi Bren

      Yes I have just noticed that too. I had a link in it so possibly not allowed, apologies all round for that. I have read that around 14g to 12g is a fairly good size with a plenty big ring or long enough bar to allow for any swelling that might happen. Sorry again for last reply and keeping you waiting. Hope this helps take care 😃

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