Sjogren’s Syndrome – Introduce yourself and meet others

Posted by cmtg @cmtg, Aug 20, 2016

I have been diagnosed with this and I’m in pain most days and would like to have discussions.

@geneseos

hi, I had punch biopsy tests and it was positive, ivig has not helped het, where is the literature

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The literature for CIDP is at the website for GBS/CIDP foundation.org . I had GBS when I was a child and CIDP suspected as an adult. I took ivig several years ago and it helped some. Zenk

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Hello All:

I thought you might find this video about Sjogren's helpful. Three different patients discuss their experiences.

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I have both sjogrens and psoriatic arthritis and rheumatoid. The doctors here in Ocala, Florida have no clue. Help. 81 years on this earth. Long time to suffer. (Many other health problems as well.) Boy wold I be a great patient for study. Well, here I am. Perhaps Mayo could use me as a study. What think??????

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@peach414144

I have both sjogrens and psoriatic arthritis and rheumatoid. The doctors here in Ocala, Florida have no clue. Help. 81 years on this earth. Long time to suffer. (Many other health problems as well.) Boy wold I be a great patient for study. Well, here I am. Perhaps Mayo could use me as a study. What think??????

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@peach414144
I'm sorry to hear that you are not getting the help that you need. You might contact the Mayo facility in Jacksonville, FL to see if they can help with your multiple autoimmune disorders.

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@peach414144

I have both sjogrens and psoriatic arthritis and rheumatoid. The doctors here in Ocala, Florida have no clue. Help. 81 years on this earth. Long time to suffer. (Many other health problems as well.) Boy wold I be a great patient for study. Well, here I am. Perhaps Mayo could use me as a study. What think??????

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Great

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In reply to @tigerlilly "Great" + (show)
@tigerlilly

@tigerlilly Mayo in Jacksonville is a miraculous place. You should def check them out. They are cutting edge in the medical field and they have a great system. By great, I mean, you get tested, get results from test, and a treatment plan all in the same day usually.

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I have lived with Sjogrens Syndrome for years. Before I was diagnosed with Sjogrens I was diagnosed with Fibromyalgia. I get tired very easy, and I am 72. I never know which of those illnesses causes what! I was never asked to take a lip biopsy. From my perspective sufferers need a kind, gentle person to deal with their ups and downs. Surround yourself with good people that love you. And then you pray…

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@8j4p2r

I have lived with Sjogrens Syndrome for years. Before I was diagnosed with Sjogrens I was diagnosed with Fibromyalgia. I get tired very easy, and I am 72. I never know which of those illnesses causes what! I was never asked to take a lip biopsy. From my perspective sufferers need a kind, gentle person to deal with their ups and downs. Surround yourself with good people that love you. And then you pray…

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Dear 8j4p2r I do sympathize with you. I have sjogrens, rheumatoid and psoriatic arthritis (and other medical problems) It is impossible to know which one is the culprit when the symptoms are similar to each other. This also impedes proper treatment. It is a guessing game. I am now with a vascular doctor who is trying to treat me for the arthritis problems. I told her I have a rheumatologist and you want me to take a medication methylprednisolone which is contradictory and dangerous to the many medical diagnosis I have. I came to this doctor for the vascular problems I have. How do I handle this??????

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@414144 Good morning That is a
problem .Do you have a PCP that's your overall Dr With anything that deals with bones and muscles just stick with your rheumatologist Talk with your Dr on the other problem about your vascular Dr I think this is what I would do. Good luck I hope you solve your problem.

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@lioness

@414144 Good morning That is a
problem .Do you have a PCP that's your overall Dr With anything that deals with bones and muscles just stick with your rheumatologist Talk with your Dr on the other problem about your vascular Dr I think this is what I would do. Good luck I hope you solve your problem.

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Dear Lioness, Peach here. I went to a vascular doctor and she starts to treat me with medicine for the two arthritis problems I have-(Rheumatoid and Psoriatic) Two medications were prescribed that were dangerous to my life. She will not address the vascular problems. How to handle this? I have asked to see a different vascular doctor. (This doctor also yells at me and I do not have a hearing problem.) I brought medical reports, etc which i was told to bring with me and she did not want to see any of them. All this in just the one office visit I had with her.

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@peach414144

Dear Lioness, Peach here. I went to a vascular doctor and she starts to treat me with medicine for the two arthritis problems I have-(Rheumatoid and Psoriatic) Two medications were prescribed that were dangerous to my life. She will not address the vascular problems. How to handle this? I have asked to see a different vascular doctor. (This doctor also yells at me and I do not have a hearing problem.) I brought medical reports, etc which i was told to bring with me and she did not want to see any of them. All this in just the one office visit I had with her.

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,@peach414144 With that kind of attitude from her I would see another vascular Dr. What did your Dr say when you told him? You can seek another one 😉 I sure would I just had a rheumatologist do same thing sort of to me The office told me to bring my records When I got to appointment I was told I cancelled it after waiting 3months so they made copies of my records and gave me another appt. Then a couple of weeks ago he left the insurance so I'm still without a rheumatologist I don't understand Dr,s doing this .Hang in there and like me figure out something else.

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@cinnamon215

Can anyone tell me where I can find medical research documents or medical text that connects autoimmune condition(s) to tooth loss and/or cracking? I understand there is a connection to dry mouth / Sjogrens and perhaps others.

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Ask your dentist and look up Mayo Clinic. Saliva keeps you mouth clear of bacteria and cavities.

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