Good Morning all you lovely ladies,
When I was given the diagnosis of Sjogrens, my dr asked if my Mother had this disease. I then asked if this was hereditary, and he said no, just wondering. What the heck...........
For all I know, she may have suffered from Sjogrens. She died 25yrs ago. She had many of the same symptons I have. If you're not specifically tested, how would you ever know.
Have any of you been told this?
Thank you all
I have to say that I'm surprised to hear a Rheumatologist answer with a complete 'no' on the hereditary question about Sjogren's. My mother surely has it as my grandmother surely had it. They were never tested, but have the very same symptoms that I do.
Why would she even ask that question if there is no genetic link?
It seems pretty obvious to me that it is surely a factor?
What do you all think?
The specific autoimmune disease is not necessarily inheritable, but the general is. For example, my mom was diagnosed w/ type 1 diabetes in her early 30's. Here I am, diagnosed with psoriatic arthritis and Sjogren's, in my 30's.
Agreed, thanks Stoney.
You would have thought that the question would have been did your mother suffer 'any autoimmune diseases'. Although the first question my current Rheumatologist asked me was if any of my family members had Psoriasis...so he went right for the genetic link with Psoriatic Arthritis. But that's a different disease!
I was very surprised that the info on the link I added said that different genes are affected in different races of people who all have Sjogrens!
Just to clarify.................it wasn't a Rheumatologist, but my primary doc. I do believe he is a quack. He makes it very clear that I don't need to see any other specialist. He can treat it all. Really.....I don't think so. I'm the one who asked to be tested for Sjogren's.
I live in Florida, where there are a bazillion doctors, but try to find a good one. No teaching hospitals down here. I miss the Philadelphia area. So many options for health care.
http://ghr.nlm.nih.gov/condition/marinesco-sjogren-syndrome
Now isn't this amazing, here is a disease I have never even heard of, less than 100 cases in the US, and look at the genetic understanding of this disease.
We have the second most common autoimmune disease, and they are no where near this understanding of it!
http://www.angieslist.com/companylist/us/fl/bonita-springs/rheumatology.htm
Sorry Connie, I was sending you on a cross country trip! LOL!
Not that I mind. I love California.
Thanks for all of your input.
Connie, if I put you on the road, I'll just bring you up here to my Doctor!
And yet more information on Gene Therapy for SS:
And one more for the road, Ladies!
Connie,
OMG! My mom died almost 25 years ago and I vividly remember her suffering from unexplainable fatigue for which she would get B-12 injections(!) and one day started taking up chewing Dentyne gum, which was completely out of character for her, it baffled my sister and me. Plus she started using eye drops a lot during the day and would put warm compresses on her eyes at night!? My aunt, her sister who is no longer alive, suffered from debilitating RA! What does this all mean?!
My RA doc, the first one, didn't seem to care about any of this when I shared it with him. When I asked him if he thought they might have had SS, he looked at me like I was growing horns out of my forehead; he dismissed it! Needless to say I moved on to another RA doc, who I am also looking to replace, she heads up a well know SS foundation and she's not that interested in a cure, she has more of a "turn down the heat on the immune system" approach to treatment and that doesn't go hand in hand with finding a cure.
I hope this was helpful!
Very helpful. Thanks, I will also share this with my sister. Who doesn't seem to have most of the symptons I have.
Thanks again.
GREAT finds, Goddess!
SGoddess said:
And one more for the road, Ladies!
Its funny you say this as I do not know what my history is my grand mother died, I never knew her , I have my other grandmother was dead at 42, and my grandfather died in motorbike crash at 24, and my other grand dad lived for a long time but did not have any symptoms, my mum , no,, my dad is dead and I don"t know about him I have SS had it now for over 20 years my brother also has a diagnoised autoimmune disorder, so I would say that there is a connection there, But unless all the syptoms come together you may never know. I have another sister that I suspect has an autoimmune disorder too
Hi exj,
I understand, my daughter-in-law's dad was adopted, and of course no options were given to contact birth parents, so there is history she is unaware of, who knows what could be there.
So sorry you lost everyone while so young, I'm glad you have your brother and sister!
Good to hear from you!
Wishing you well,
SK
Connie, I don't know if Sjogren's is considered to be a genetic disease in the true sense but I think there could be a tendency to have autoimmune disorders present in families. My mom's side of the family has several instances of Hashimoto's in three generations. I was diagnosed with Sjogren's in July 2013 and it didn't occur to me until about a month ago that it is likely that my mom had it too. One Saturday morning I was really dry and it surprised me to hear" I'm so dry I could spit cotton" come out of my mouth. Not a phrase I normally use! But my Mom did and back then we had no idea how uncomfortable she must have been. I'll ask my rheumy about it next appointment.
Connie,
Check out either Cleveland Clinic or Mayo in Florida. You are sure to get a competent doctor at either. Call the nurse hot line and ask which rheumatologist specializes in Sjogren's. That's what I did. It worked. The nurse will weed out the list.
Connie said:
Just to clarify.................it wasn't a Rheumatologist, but my primary doc. I do believe he is a quack. He makes it very clear that I don't need to see any other specialist. He can treat it all. Really.....I don't think so. I'm the one who asked to be tested for Sjogren's.
I live in Florida, where there are a bazillion doctors, but try to find a good one. No teaching hospitals down here. I miss the Philadelphia area. So many options for health care.
Thanks Maureen and Happy Gramma, I believe we have a Cleveland Clinic in my area.