sjorgrems syndrome

Posted by Morgen S @morgens, Jul 4, 2013

I have been very sick with about 11 symptoms of sjorgrems and my oral surgeons office in Boston thinks it is likely I have it. He immediately put me on meds for burning mouth. I tested later positive for fungal infection there.Also burning lips. All the other symptoms can be incapacitating. and I have had them on and off for years…burst blood vessels of eye. Rapidly within weeks my symtoms of dizziness and numbing of hands and feet and under feet burning got way worse and more frequent.My salivia is not producing but 1 third.I am on meds. My Drs in Maine leave me hanging and act like I am crazy and are unwilling to help..even though The Boston Dr faxed some info to them and had asked them to order labs here in Maine…I have no medical insurance and so I asked him not to do the labs there where he wanted to. He is on vacation for the fourth of July and won’t return until Monday.My horrible primary care facility in Maine told me that they received the Labs back and they are all normal but one an I gg or something and that was barely elevated. So The A N A came back normal and now they are back to acting like it is all in my head. I even saw them several times about the lips that had been peeling in whole sheets every 2 minutes or so and build up with nasty skin and grew what looked like white mold on them.The Maine drs just said”huh!,we don’t know!” I had to drop out of school because I itched like crazy developed allegies suddenly to foods I always ate…I am up to over 7 foods allegic to now by my assessment.I am so discouraged now because I had hoped the a na test or rhematoid test would validate my pain.I suffer agonizing joint pain that moves around and comes and goes..I need help rolling over alot and once when there was not even pain in my legs ..one of my legs just didn’t work when I got up in the morning.It was not asllep or anything..it just didn’t work or I couldn’t feel it or something and I almost fell to the floor. So anyway,waiting on my doctor from Boston to come back.I had made an appointment for friday..tomorrow to see my primary care in maine about the dizziness but they were so insulting about the test results that I decided to come right out and ask them if they had ever bothered to read about sjorgrems on line or anywhere before I came in.They proudly said they had not.I cancelled my appointment then and there. Stress makes my lips burn and the symptoms come back worse so I decided I would try to retain what pride I have left in the face of the insults that are not honestly aired and try to preserve my health from being ravaged by something that supposedly does not exist. I am hoping my Dr in Boston..who saw me for three hours and was very attentive and believed seriously that this was sjorgrems does not desert me now that the labs in Maine did not come back positive…except for that one test.So has this ever happened to anyone else where the test doesn’t match the reality of the symptoms?Are labs ever wrong in this case? Glad at least this site is here.It helps. Morgen S

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I had the mouth eyes and nose issue. Rheumatologist put me on some meds and I Amish better

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@diannadra

I had the mouth eyes and nose issue. Rheumatologist put me on some meds and I Amish better

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hI,
Did you have tests/labs done and they came out positive? Is that why they put you on meds to help ? Thanks for responding.
Morgen S

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I had tests and yes came back and was put on meds. I really feel your pain

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@diannadra

I had the mouth eyes and nose issue. Rheumatologist put me on some meds and I Amish better

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Much better

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@diannadra

I had tests and yes came back and was put on meds. I really feel your pain

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How long did you have it until you were diagnosed and was it your primary care doctor who diagnosed you or did you also have to go to a specialist?

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I think that I have that. How is it tested?

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@carolee888

I think that I have that. How is it tested?

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Hi @carolee888, I'm not sure anyone is still following this older discussion so I thought I would jump in and respond. Here's some information on the diagnosis and treatment of Sjogren's syndrome: Sjogren's syndrome – Diagnosis and treatment – Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/diagnosis-treatment/drc-20353221

There is also another discussion with recent posts that you might want to read through and post any questions you might have:
— Sjogren’s Syndrome – Introduce yourself and meet others: https://connect.mayoclinic.org/discussion/sjogrens/

Have you discussed your symptoms with a doctor?

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Yes labs can be wrong. You may have loads of symptoms but labs are negative. SS is hard to diagnose.

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