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.
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.
Jump to this post
@ 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
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?
Positive ANA, did not have the gland biopsy. Plaquenel prescribed have not taken yet. I have the dry mouth, dry eyes which are typical and lately nausea.
Positive ANA is not enough. I also have a high ANA and all other blood work was normal. I have a positive lip biopsy. Also dry mouth, eyes and extremely dry skin.
@gemmax I had rheumatic fever at age 4. Pneumonia at 18, Valley Fever at 32, dx with COPD at 35, mac at 47, pseudomonas at 58. I have had a few milestone illnesses, but I'd say I was off to a rocky start at age 4. I have had lots of illness between all of these. These were just the ones that tried to kill me.
@oregongirl That is a dreadful story about your husband. That sounds inexcusable. I too am sorry for your loss. I hope you took that matter up with the higher ups at that hospital. I have had several trips to the emergency room in the past several years. I found that they attended to me right away when I'd arrive by ambulance. My husband drove me another time and got the same kind of treatment as your husband. I couldn't breathe and my heart rate was at 180 bpm for hours. I was freaking out and yet I was stuck in the waiting room. My husband was shouting at them and insisted they take me back. I learned my lesson, I will always take an ambulance if I feel that dire again. Had your husband gone by ambulance when that happened? I feel so badly that this happened to you and your husband. -Hugs
@windwalker You are so right about the wisdom of going in an ambulance. You. will. get faster better care generally. Although my husband had called the EMT’s when I had horrible headpain,abt a month ago, they told him to drive me to the ER. I was there in waiting room for 6 hours when i got up from the chair and made my way to the door and told threm I was leaving. They literally begged me to stay after not being seen for. 6 hours. I said no way and came home in so much pain. They have my extensive records thru the hospital,I honestly think they were going to keep me there until doctors came in the next day who might have some idea what was going on.,We really have to be our own advocates.
@windwalker I am so sorry.. I too have had many significant illnesses.Even as a young child I had several illnesses. I will have to make a list one day. it will be long one.Still I try to remember that others are even more ill and need us to csre and to listen. There have been times when I have said “why me?” but the answer is “so that you can help someone else”. As human beings that is our highest calling…to be a blessing and a help to others.
Connect with thousands of patients and caregivers for support and answers.
Already have an account? Sign In