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Sjogren's Syndrome. Can anyone help?
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Sjogren's Syndrome. Can anyone help?

Hi, I was wondering if anyone has experience of Sjogren's syndrome. For the last year I have been going through a premature menopause and thyroid problems. However before all this started, I had other symptoms that docs keep putting down to menopause, but it's beginning to make me think something might be being missed, although a lot of the symptoms could be lack of oestrogen. But basically I'm drying out from the inside out. My mouth is dry, gums so sore, teeth breaking and dying and gingivitis. I am also getting blisters and blood blisters inside my lower lip on and off when I start to eat. My eyes are intermittenly dry and gritty. I have had a dry cough for 4 months now and 2 chest infections which I've never had before. I've also developed GERD with the cough. I get terrible rib pains on and off where I can't breathe in and out it hurts so much. I don't have any rashes, apart from many broken thread veins on my upper arms and on my chest, which also gets blood blisters too. My muscles are weak and I often get this awful sort of inner trembling is the only way I can describe it. I can no longer drink alcohol because it seems to make the symptoms so much worse. Two years ago all my bloods showed an inflammatory reaction but they put it down to a bacterial infection. But it is since this time I have not been right. It may be just the menopause and thryoid. I'm sorry this is so long but I'm getting desperate for answers. My docs say it's stress because of all that my body is going through. But i heard of an auto-immune disease called Sjogrens syndrome and it seems so like what I'm experiencing. And I was just wondering if any of you had it and think I could possibly have it. Thank you.
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Avatar_f_tn
Hello,

Sorry to hear about all your problems.I was just Dx's this year with Sjorgen's because for the last 3 years I've noticed alot of dryness with my eyes and mouth.Like you I'm have problems with my mouth my teeth are falling out dentist said I'm having alot of problems with the bone needs to pull 3 because of the bone.etc.....So back to Sjorgren's 3 years ago my brother passed and tears WOULDN'T flow but inside I ws balling like a baby but didn't put2 and 2 together.So in May I asked my Dr. to run a panel of blood test for  SJORGREN'S SYNDROME A & B and A came back POSITIVE.
I've been Dx's with SLE,RAYNAUD'S,ARTHRITIS and SJORGREN'S.And take alot of meds. to keep everything under control.If you have any questions get back.

Take Care,
Marys
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484098_tn?1259531132
Well, I was just typing to you and it all disappeared.  So I will start over.  

I came up positive in 2000 for Sjogrens.  It was the first I had ever heard of it and I did research on the net.  Wikipedia and Sjogrens.org has info.  But, you sound like your symptoms are much worse than mine.  I only had dry vaginal area, dry eyes and mouth.  At the time, I was also going through Peri-menopause.  So we were always thinking menopause until a very smart nurse noticed a butterfly rash on my face.  She said, "you have Lupus!"  She did the blood tests and that's when the sjogren's came up positive.  I also went through a time when my glands were OVERACTIVE.  I couldn't get my eyes to stop running, and I was making soooo much saliva that I was spitting at people (unintended) when I spoke.  And I was having trouble with choking on my spit, simply because there was soooo much of it.  I also have autoimmune hepatitis and have had pain in my right rib cage.  But, yours sounds more like a pleurisy type pain.  I would bet you have Sjogren's and Lupus as well as maybe vasculitis and possibly Celiacs.  You'll want to get a different doctor ASAP and start over, tell the NEW doc that you switched because you weren't being taken seriously, and get tested for Celiacs, and Sjogren's and Lupus.  You may also want to have them check you for MS or parkinsons.  Tho I highly doubt that's it.  The Celiacs will make you weak and shaky due to not absorbing nutrients.  It's hard telling if you have any of this---u won't know till you're tested and that won't happen till some doc takes you seriously.  Menopause does do a lot of strange things, as does stress, but not all those things.  My stepdad got a bad case of Shingles and Chicken pox all at once, he was about 60 years old, and it stressed his body so much his jaws DETERIORATED, and he had to have a specialist in Saint Louis remake his jaws with pig jaws.  I can't say I know how that works, but my step dad looks normal.  Anyway, the specialist said it was from being over stressed from the pain!  Do you truly have a Thyroid issue that you've tested positive for, are is the doc just guessing.  Thyroid problems will cause many of your same problems.  But I don't think it would cause the dryness in the eyes and mouth.  GET A NEW DOC, SOON.  Good luck and please let us know what you end up finding out.  
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Thank you so much both of you for your advice. As Zmombomb says all the docs have been concentrating on is my premature menopause, and I'm having trouble getting them to look at other issues, as they have checked me for most diseases. But I just feel they are missing something. I have an appt the day after tomorrow and I'm going to give it all I've got to make them check me for this last thing. For I have got up yet again today, with burning eyes and such a sore mouth, and I just don't see how menopause could make it this bad. Once again thanks very much.
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484098_tn?1259531132
go to sjogrens dot org and up in the top left corner it has the word ORGANS underlined in blue. Click on that, and it will pop up a picture of the body with info on what is involved in Sjogrens.  It does mention that your body doesn't absorb nutrients, like Celiacs does, so that may be where your inner trembling is from.  Anyway, I tried to copy and paste it here but it wouldn't work.  Please Please let us know what you come up with.
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Avatar_f_tn
Just wanted wanted to say good luck with your appt. and remember its YOUR appt. and take in a list of questions because once you get there you will probably forget half of what you wnated to ask so I've always took a list of questions in. Remember your paying to see the Dr. so ask them to run test that you like you'll need for a Dx's because you probably won't see them for at least a month and then you'll have the what ifs.like should asked this or had that test etc......Like I said I went in asked for a panel of test for Sjorgren's and it came back POSITIVE.Are you putting eye drops in and sugarless gum.I don't leave home without water either.Just a couple things that help me through the day.

Good Luck,
Mary
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440728_tn?1234648902
Thanks again for your support. Just come back from the docs. I didn't even have to ask directly. She told me! She thinks I may have Sjogren's, but it has been missed because they've all been concentrating on an early menopause. I have to see what the endo says next week and they are also going to refer me to a Rhematologist. My ANA blood tests were normal, but she said that this is the case in some people. She said it is often diagnosed on symptoms alone. But they might do a lip biopsy. Do you know if a lip biopsy absolutely confirms it? Or can that be normal and you can still have it anyway. Thanks again for all your help.
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Avatar_f_tn
Hi Rite,

I'm glad the your Dr. is finally looking after a different Dx other then menopause.Yes the lip biopsy should be a confirm diagnose for Sjorgren's along with a Schirmer's test for the eyes.Its a slit-lamp eye test to check for tears, to see if your tear ducts are drying up.Is she doing mor blood test or is she waiting for the Rheumy to do it?Does she think you have anything else going on?I'm so happy for you that your finally getting things going.

Take Care,
Mary
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440728_tn?1234648902
I'm not sure until Tues, my normal GP says she might do more bloods but will probably refer me straight to a Rheumatologist. She said the endo will still have a good idea about exocrine glands anyway as they are so closely linked to endocrine. She said I should have told her how bad it was getting this year before now. Also, if it's not Sjogren's then it can only be severe Oestrogen depletion. Because although I've been drying up for ages, things are even worse the last 2 days as I am waking up with goo in the corners of my eyes, and sticky patches all round my lips. I don't know if this is to do with it.
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440728_tn?1234648902
I'm not sure until Tues, my normal GP says she might do more bloods but will probably refer me straight to a Rheumatologist. She said the endo will still have a good idea about exocrine glands anyway as they are so closely linked to endocrine. She said I should have told her how bad it was getting this year before now. Also, if it's not Sjogren's then it can only be severe Oestrogen depletion. Because although I've been drying up for ages, things are even worse the last 2 days as I am waking up with goo in the corners of my eyes, and sticky patches all round my lips. I don't know if this is to do with it.
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