Mayo Clinic Connect
I have been diagnosed with this and I’m in pain most days and would like to have discussions.
Liked by Mamacita, Alumna Mentor, maryy, treebilder
Hi, @gemmax and @mickie75 — I wanted to introduce you to some of the members on this site who have talked about Sjogren's syndrome — in themselves or in a loved one — here in this discussion or elsewhere in the Connect community, such as @cmtg @kibwezi @marylou705 @peach414144 @johnwburns @oldkarl @devonsdad2008 @graveltruck @jewel8888 @sebley12 @briansr @frank1 @ccorrconro @mswanda @bettyjeanne @kkteel1 @66andcounting and others.
@gemmax and @mickie75 — wondering if you'd tell a bit about your story with Sjogren's, and hoping some of the others here might introduce themselves and lend a hand with any challenges you are experiencing with this syndrome.
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My wonderful husband was so weak. I took him to doctor. We we're waiting in waiting room for what seemed like forever. I got upset and walked back and told them he was very sick. I told the Dr I thought he was dying. He said…he is NOT dying. My husband passed the next evening. I think doctors are not what they used to be. They thought they were God and found out they were not.
Liked by jewel8888, Gem
@gemmax, Hello Gem. Thank you for sharing your Sjogren experience. My sister also has Sjogren's along with Systemic Lupus and vitiglio. Autoimmune diseases run in my family. I have congenital COPD and have a fragile immune response system, my daughter has Raynaud's Syndrome, and a first cousin with Sarcoidosis. Do you find that others in your family also have autoimmune issues?
Liked by jewel8888, Lisa Lucier, Gem
Oh, @oregongirl — I'm so sorry to hear about this painful experience and for the loss of your wonderful husband.
@windwalker Oh yes. There are several family members with autoimmune illness. I have done alot of studying and it seems that all of these illnesses are becoming more prevalent or perhaps doctors are learning how to diagnose them better.We have 3 with Sjogren’s, 1 with psoriatic arthritis, 3 with RA, 1 with Lupus just in recent times. I have an interesting ancestry which I have often wondered might play a role in the tendency to have these illnesses. Honestly, over the period oftime that i have been ill, I have seen some improvment in the knowledge that is available to doctors, but it is still slim. Most people become autoimmune after a serious event such as an infection or other illness. With me, it was Legionaires disease. Did you have an event or an illness that you can point to as a starting point?
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@oregongirl I care and I’m sorry for your sorrow.
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Really sorry for your loss @oregonngirl
That must have been so terrifying.
I have been in ER recentl several times and I would not want main Dr. for anything. I begged him to keep the woman I was helping at my home after a terrible fall (broke wrist and groin tear) social severcis had me take her to their sister hospital where they did help her get to rehabilitation place.
Liked by Lisa Lucier
@ dear oregonwoman IT IS A SHAME TO THE MEDICAL FIELD FOR YOUR HUSBAND TO BE MISTREATED THIS WAY. I AM SURE THAT ALL WHO WILL READ THIS WILL FEEL THE SAME. My husband could not rise from the bed. When I called his doctor she said in a nasty way "If you think he ts that sick then take him to the ER". We did……'he died six days later." sO i KNOW HOW YOU FEEL. sHE WAS HIS FAMILY DOCTOR FOR YEARS. wHERE IS THE COMPASSION? the humanity?
Liked by Gem
@ COULD NOT COMPARE WITH FAMILY HISTORIES AS HITLER COOKED THEM IN HIS OVENS. peach
@peach414144 When I was working on my genealogy, I found a 3xgrandmother who was a slave..born into it after her mother ws taken from Mopzambique. I sat down and cried for her and her mother and younger sisters and brothers. Her burial place remains unknown as does my 3xgrandfather, a european . I still cry for the atrocities of man. I take some solace from these words from Ecclesiastes 12:7 "Then shall the dust return to the earth as it was: and the spirit shall return unto God who gave it.” It is my belief that God knows us all. Our legacies, our prayers are not lost. I can't know your pain, but I can care about all the lives that have been lost to evil. Be blessed.
Liked by Terri Martin, Volunteer Mentor, jewel8888
peach414144 and that is the most important question of these times. We are not ging to let evil win however.
@ Dear Gemmax. Sorry to sound upset. I have tried to find where my family was wiped out. The Germans kept very good records. My family the Hungarians were killed last. During the very last days of the war. So no family history. This answer was from the Red Cross.
But I must say: I do not hold any hatred towards the German people. There were many Germans who did not want to go long with Hitler but if they did not they would be killed,and their children and their entire family. I am very sorry if this is inapropriate and does not belong here, wipe it out if you wish.
@peach414144 You have every right to be upset. I think that all of the sorrows that we feel affect our health.Don’t ever apologize for being real. Have a great day!
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?
Who was the Doctor that said “don’t worry about Sjögrens?
Was it at the Mayo Clinic? Thanks.
I have Sjögrens too and it affected my ear and now my kidney. I do not take any meds. for Sjögrens only lots of water
Liked by Terri Martin, Volunteer Mentor
I am so sorrt that your husband passed away. Did you notify that freken Doctor that said your husband isn’t dying. I hope you are able to sue him. What caused his death
@peach414144 , I totally get that, about poor medical attention. I live in area where good medical practice is non-existant. I went to the cardiologist here for my annual check-up in order to have my heart meds updated; the dr never even put his stethescope to my chest!! A heart doctor! He just asked me if the med dose was still working for me. I now drivr 2 1/2 each way to be seen at the Mayo Clinic in Javksonville. I will NOT trust my health to anyone else. Can you get to a non-profit, research type medical facility?
Liked by ess77
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