New and in denial

Posted , 9 users are following.

Hi All

So Sjogrens syndrome is on the lips of my consultants at the mo and im not quite agreeing. I have had 'symptoms' for years and put it down to : working too much, getting older (53) having so many children (had 7) being/going through menopause, etc etc etc. Does this sound familiar?

My symptoms over many years are:

Ulcerative colitis (rarely get any flares any more) dry eyes (occasionally) dry mouth, blocked parotid duct, lichen planus (vaginal tissue, awful joint pains ( back hips neck, which i assumed from having so many children) B12 deficiency ( had injections but stopped them) very dry skin, cold hands and feet, positive for gastric parietal cell antibodies, positive for MPO. antibodies (ana) chronic kidney disease stage 3b with persistent invisible haematuria ( neph dr doesnt know what has caused it) poor sleep pattern ( which i think due to erratic night shifts i work) night sweats..... better stop here ๐Ÿ˜‚

Is this just getting older? or have I got Sjogrens? other than the above I'm great! ๐Ÿ˜

would appreciate anyones thoughts, many thanks x

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12 Replies

  • Posted

    Well I am no expert but it seems you have something going on really. If your doc thinks Sjogren's I think he/she may be right. If you have a diagnosis and get treatment you may find a log of your problems get better. I have something very similar and the joint pain is totally under control using something called Plaquenil which is often prescribed for SS. If you need b12 injections ...I also do btw....I would take them. You could improve your quality of life dramatically by being treated for SS if that is what you have.

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    • Posted

      and in the UK it's now on the list of disabilities for which benefits can be paid.AND not all are means tested. If one needs help e.g ironing, cleaning, taxis, ready made meals, this can be a help.

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    • Posted

      Were u tested for vitamin D ? My B12 came back as normal ( i take complex B50 daily) and vit D as just 'sufficient borderline' even though i am taking 1000 i.u daily ( i also take plaquenil)

      I have read online about the Coimbra Protocol which is massive doses of D3 but has to be under supervision on a Dr trained in this. Their facebook has testmonials from people claiming to be in total remission from MS after using this Protocol .

      Autoimmune sufferers seem to be generally low in vit D.

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  • Posted

    Hey Jane

    It certainly sounds like an autoimmune condition of some sort. They may chop and change the exact diagnosis as things progress.

    I'm interested in the fact you have UC. Would you say your other symptoms flare as the UC does? I am convinced that my sjogrens-like symptoms arise from a gut problem - it's like I have a blockage somewhere.

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    • Posted

      Uc symptoms go hand in and with auto immune disorders. It is an ongoing chicken and egg debate about which causes which. When I am unwell gut inflammation flares up. I am def of the opinion that the auto immune disorder causes my gut/ bowel symptoms. X

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    • Posted

      Hi Celeste

      I cant say I would notice as I dont get enough flare ups these days, what I do get is bouts of queasiness and stomach irritation on hard to digest foods like bell peppers or fresh figs.

      But the UC did flare up whilst these symptoms worsened so maybe the autoimmune side of things activates everything when a flare up comes?

      chicken and egg...

      Good luck x

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  • Posted

    Hi Jane,

    I would like to hear why your doctors think it is Sjogren's. Did one of your blood tests turn up newly positive? Is the blocked parotid duct a new thing for you? I have had that, and Sjogren's is the reason.

    Does the new tentative diagnosis mean they are looking to start a new treatment?

    You seem to have a great attitude. I do think denial may be the way to go, if you can manage it. I use it whenever I can instead of pain meds. But I also use plaquenil to stop the progression of my inflammatory arthritis. I think you need to get more information from your doctor.

    Good luck!

    Kathy

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    • Posted

      Hi Kathy

      So Sept last year I had a back tooth extracted which went horribly wrong and fractured my upper jaw.

      I had to have an operation.

      After the op, where they used the fat from my cheek to fix the hole, I developed the parotid duct stenosis, face became huge. Massage slowly settled it. Then the dry mouth started, tongue sticking to roof of mouth, no saliva or minimal in the glands.

      Back at the Nephrology clinic they were still trying to work out why I had kidney disease and a new blood test for ANA antibodies can back positive for MPO antibodies.

      Previous to the above I had started to have difficulty swallowing any tablets and food would get stuck in my throat but and endoscopy showed nothing so hence not obviously anything wrong until you put everything together.

      I am also Rhesus Neg blood group which produces antibodies when pregnant with a positive baby. I wondered if that had anything to do with autoimmunity.

      The UC only developed when I was pregnant with my first child whose was blood group O positive! And my recent positive antibody test was whilst I had a mini flare up of UC.

      So im a mixed bag at the moment, Im just waiting for one bright spark at the hospital to put it altogether and make a permanent diagnosis.

      With regards to treatment, I will only have it if it saves my kidneys as im only 41% . I think I have some form of autoimmune but which one the question.

      ๐Ÿ˜‰๐Ÿ˜˜

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  • Posted

    Hello Jane, I can relate to having an autoimmune and not knowing which one I have been in that boat for 13 years now. I also have all the symptoms of Sjogrens but not the blood marker. I have seen several doctors over the last few years and not until the last 2 have I actually gotten anywhere. I am a Veteran and sometimes the VA takes the long trip around a problem. I have the dry eye, dry mouth and nose all severe. Sometimes I feel like I am damaging my eye trying to dig out the rick size grains. I have gastroparesis and acute pancreatitis. I do not understand any of the blood markers only that my blood has been checked twice and I show no markers for any autoimmune and yet there is an infection in my blood. I am being treated for Sjogrens with the drug Cevimeline HLC. It helps some my nose is not as bad the nose bleeds have stopped and my eyes are a bit better.

    What I am trying to say is this. My neurologist tells me "What do you care if we don't know what you have. We're controlling your pain aren't we".

    I am not happy with his reply to my question of "can't we run some tests". My pain is not totally controlled but I am functioning. Do I wish my life was better Oh heck yes!! I have new doctors now My Rheumatologists is still trying to help me which is more than I could have hoped for in the past 13 years. Like you my joints hurt all day long. My stomach is so inflamed and painful. I try my best to live my life every day because I do not want this to slow me down or deprive me of living but sometimes I am confined to my room for a week because it is so bad I cannot move, I cannot eat and my clothes hurt me.

    Please remember that you may not get an answer but never let your doctors give up on you just keep finding a doctor who will keep looking. It does not matter if they do not find something as long as they are trying to find out what is wrong and treating a symptom along way the is ok too.

    If at first you do not succeed try try again. I pray your doctors find you your answer.

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    • Posted

      So sad and so typical of how these conditions are mismanaged time and time again while people suffer like you do.

      I use plaquenil/hydrixychloroquine for joint pain and it works wonders for that. Simetimes blood work shows nothing that is very common. I have a specialist who understands that x

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    • Posted

      Its sounds like you need to see a Rheumatologist not a neurologist!

      I hope you get some answers soon.

      I think we all cope better when we have a name for the affliction, the not knowing is the stress causer!

      Good luck x

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  • Posted

    thank you after all these years I finally saw a Rheumatologist and she is treating my dry eyes, mouth and it also helped the nose. I do apologize if I have offended you I know you are dealing with sooooo much and you just want to scream. It is like if you give in and cry you will never stop. I commend you for trying to stay cheery. I feel your anguish at the diseases plaguing you and I believe that is more than one. I implore you to begin taking your B12 your doctor gave them to you fro a reason. My B12 and D3 are both deficient. When I was finally able to see my Rheumatologist I told her "Please do not give up on me, just find one thing and we will move on from there." She said she loved my attitude and things began to happen. My kidneys are at 61% and I only found that out because I was going to donate one of mine. Not because I'm a saint but because I thought I was dying and this other person needed a kidney. My doctor said no. I have slowly began to get better then pain is not as much and I am not miserable. The trembling has stopped. Maybe I was just giving I am not sure I only know I was tired of all the pain and bloody noses and vomiting. My eyes full of rocks. I know there are answers for you and all we need to believe in is for or Doctors to find just one thing. Especially when we are a laundry list of problems and our doctor cannot lock onto the issue. I pray for you and your comfort. I'm not sure if this is for you but prayer always helps me you can go to dailyprayer.us and become a member or just read the daily prayer. ๐Ÿ˜‰

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