Sjogrens

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.

@sueleerock

I am not sure who i'm replying too. But everyone is very kind on this site. Thank you. I'm half-blind and typing on a small phone. I have no car, no energy to do anything, two broken feet, herniated disc, last stage cirrhosis. Right now my energy is going toward 46 years of beautiful items I have collected to sell for money. My old dog betsy is sick can't take her to the vet, and for that matter, can't take myself to a doc, they know I'm a charity case. I worked for 30 yrs. I cant deal with being sick and broke at the same time. LOL. Thanks to everyone for all the kind words.

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I reread what I wrote. Did not list all medical complaints, because no one wants to hear it. But since getting sjorgens, I could probably add on another entire pg. Of complaints. Too numerous to mention. As I said previously, it really does feel like I am fighting every day just to stay alive. One thing I make sure I have money for is my fish oil and my antioxidants. My dad died at 51,'mom at 67, heart attack. I also went to 3 doctors just recently that I complained to about not being able to breathe. Not one of them referred me to a specialist. They told me I was fine. I referred myself to find out emphysema and copd. Too much on top of everything else. Did quit smoking, although after 47 yrs. (Gross) of smoking when I'm stressed like now that is a terrible struggle too.

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@lioness

@peach414144 I'm so sorry for all you are going through . If you can find a group therapy ,not medical, but those who all have same as you it is very helpful. When I was first diagnosed with fibromyalgia there was a group that met in the hospital ,not hospital personal so we talked about what we had extent to it and how some people used different things that helped them Just a suggestion but this did help me understand some things and some useful tools that I still use .

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Yes, you are wise. I did look for any group but it seems where I live they do not exist. Of course if you can pay a social worker that is about the only way where I live.

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@colleenyoung

Welcome to Connect @cmtg. You have landed in the right place. I’d like to introduce you to a few other members who also have Sjogren’s. Please meet @johnwburns @blindeyepug @meemer @kyjeanne @uncbball and @ccorrconro for a start. I’m confident others with join this discussion too. I also encourage you to browse the other discussions in the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/

CMTG – why type of pain do you experience and what methods or treatment do you use to try to manage it?

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hi, all, I have sjogrens with small fiber neuropathy, no meds helps and I am on I v. I g , no changes yet, and it has been seven months, anyone else

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@peach414144

@ Yes, I have psjogrems and other autoimmune diseases. No teeth, dry eyes, gloucoma, etc., etc., etc. It gets very bad. Somehow I am still here but it gets harder but so far I am still here.

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Hi…I was reading your comment….I have RA,severe osteoporosis and sjogrens…my teeth are a problem….loosing one at a time…chewing miserable… going into Tufts Dept of Oral Medicine and hope I get some perspective on tooth loss… with bone loss I am nervous and recently cancelled appt for iv Treatment for osteoporosis that has jaw necrosis as side effect…I am having some teeth pulled….maybe later

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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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@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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@cinnamon215 here's a few that may help…

Autoimmune Diseases and Oral Health: 30-Year Follow-Up of a Swedish Cohort
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5872203/

Autoimmune Conditions and Oral Health
https://www.hss.edu/conditions_autoimmune-conditions-and-oral-health.asp

Role of Autoimmune Responses in Periodontal Disease
https://www.hindawi.com/journals/ad/2014/596824/

ARE BLEEDING GUMS THE FIRST SIGN OF AUTO-IMMUNITY?
https://terrywahls.com/are-bleeding-gums-the-first-sign-of-auto-immunity/

Liked by cinnamon215

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@johnbishop

@cinnamon215 here's a few that may help…

Autoimmune Diseases and Oral Health: 30-Year Follow-Up of a Swedish Cohort
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5872203/

Autoimmune Conditions and Oral Health
https://www.hss.edu/conditions_autoimmune-conditions-and-oral-health.asp

Role of Autoimmune Responses in Periodontal Disease
https://www.hindawi.com/journals/ad/2014/596824/

ARE BLEEDING GUMS THE FIRST SIGN OF AUTO-IMMUNITY?
https://terrywahls.com/are-bleeding-gums-the-first-sign-of-auto-immunity/

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Thank you, John!! YOU MADE MY DAY!

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@geneseos

hi, all, I have sjogrens with small fiber neuropathy, no meds helps and I am on I v. I g , no changes yet, and it has been seven months, anyone else

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Hi Geneseos

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@geneseos

hi, all, I have sjogrens with small fiber neuropathy, no meds helps and I am on I v. I g , no changes yet, and it has been seven months, anyone else

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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

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@johnbishop

@cinnamon215 here's a few that may help…

Autoimmune Diseases and Oral Health: 30-Year Follow-Up of a Swedish Cohort
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5872203/

Autoimmune Conditions and Oral Health
https://www.hss.edu/conditions_autoimmune-conditions-and-oral-health.asp

Role of Autoimmune Responses in Periodontal Disease
https://www.hindawi.com/journals/ad/2014/596824/

ARE BLEEDING GUMS THE FIRST SIGN OF AUTO-IMMUNITY?
https://terrywahls.com/are-bleeding-gums-the-first-sign-of-auto-immunity/

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@johnbishop I like your new picture

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@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

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

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@lioness

@johnbishop I like your new picture

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Thanks @lioness

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@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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