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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

geneseos | @geneseos | Mar 23, 2019

In reply to @zenk "Hi Geneseos, I have Sjogrens too. I have neuropathy in my feet and lower leg. I..." + (show)

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

John, Volunteer Mentor | @johnbishop | Mar 24, 2019

In reply to @lioness "@johnbishop I like your new picture" + (show)

Thanks @lioness ☺

zenk | @zenk | Mar 24, 2019

In reply to @geneseos "hi, I had punch biopsy tests and it was positive, ivig has not helped het, where..." + (show)

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

Teresa, Volunteer Mentor | @hopeful33250 | May 8, 2019

Hello All:

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

peach414144 | @peach414144 | May 8, 2019

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??????

Teresa, Volunteer Mentor | @hopeful33250 | May 9, 2019

In reply to @peach414144 "I have both sjogrens and psoriatic arthritis and rheumatoid. The doctors here in Ocala, Florida have..." + (show)

@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.

Tigerlilly | @tigerlilly | May 13, 2019

In reply to @peach414144 "I have both sjogrens and psoriatic arthritis and rheumatoid. The doctors here in Ocala, Florida have..." + (show)

Great

Terri Martin, Volunteer Mentor | @windwalker | May 14, 2019

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

@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.

8j4p2r | @8j4p2r | May 14, 2019

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...

peach414144 | @peach414144 | May 15, 2019

In reply to @8j4p2r "I have lived with Sjogrens Syndrome for years. Before I was diagnosed with Sjogrens I was..." + (show)

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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