1. < Autoimmune Diseases

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)
@zenk

Hi Geneseos, I have Sjogrens too. I have neuropathy in my feet and lower leg. I am going to a Neurologist in April . How did you get your diagnosis of "Small Fiber Neuropathy" . What are your symptoms? Were there any conclusive test for the diagnosis.
I have been taking Gabapentin at night and pain killers in the day. Do you take anything other than IVIG ?
Wish the IG would help you. Have you looked at any of the CIDP literature? Thanks so much, Zenk

Jump to this post

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

REPLY
1 reply
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)
@geneseos

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

Jump to this post

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

REPLY
Mentor
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.

REPLY
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??????

REPLY
2 replies
Mentor
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 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??????

Jump to this post

@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.

REPLY
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)
@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??????

Jump to this post

Great

REPLY
1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 14, 2019
In reply to @tigerlilly "Great" + (show)
@tigerlilly

Great

Jump to this post

@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.

REPLY
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...

REPLY
1 reply
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)
@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...

Jump to this post

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??????

REPLY
View MoreView Less
Please sign in or register to post a reply.