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Meredith0903
@meredith0903

Posts: 5
Joined: Apr 12, 2012

Would like to hear from people with Sjogrens

Posted by @meredith0903, Apr 12, 2012

I was diagnosed with Sjogrens at age 23. I am now 38 and my main symptoms (aside from the dry eyes and mouth), were fatigue and numbness. Lately I have been getting concerned about cognitive problems. I seem to be more forgetful, have trouble concentrating, trouble with numbers, and coming up with solutions to problems. I feel like it is starting to affect my job and I can’t afford not to work. I have been blaming it on my constant fatigue, but now am not so sure. I would love to hear from anyone who has similar symptoms! Thank you.

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powerofpositive
@powerofpositive

Posts: 55
Joined: Nov 04, 2011
Posted by @powerofpositive, Apr 13, 2012

I was Dx with Sjogrens last year, Sjogrens primary-cutanious b-cell lymphoma ?secondary. Also RA and …., I’m 54, Had intense eye & thirst issues since @2006. Fatigue indescribable,off and on,then always & ever increasing with sleep and pain isssues, etc. I no longer work. Miss it, but am finding and revisiting hobbies. I have noticed now that the world wind of the last year is slowing down (Diagnoses, 2nd opinions, Chemo (talk about a fog) ego maniac physicians, major problems with my medical records…which I advocate to others now to obtain on an ongoing basis…it is amazing the errors over and over ’cause they copy off each others notes, 9why sit there talking to them…they obviously were’nt listening) miss quote you, ommit issues brought up etc…..! Sad state of affairs and may the heavens help us all if electronic medical records goes national…with the errors in my chart, like cardiac surgery in my 20’s that never occured it is insanity at best. And I’m not alone, the more I speak/advocate for this, so many others have horror stories. All that said. The fatigue has improved alot from where it was, stress, anxiety and depression post diagnoses/treatment added a different dimension to the fatigue. But it has improved. Sometimes we can be hard on ourselves Fatigue surely affects the cognitive process to varying degrees. Is there depression? Some adjust easily to chronic illness, others not so much. Talk to your Rheumy ( and get the records), try to sort this out. Could be a few issues compiled. Oh, I had issues with numbers prior to diagnoses/treatment but not now. Fatigue? Sjogrens? Pain? Who knows?


Meredith0903
@meredith0903

Posts: 5
Joined: Apr 12, 2012
Posted by @meredith0903, Apr 13, 2012

Thank you for replying. I’ve set up an appointment to talk to my Rheumatologist. I am just concerned that I won’t be able to work and financially, this is not an option for our family.


sidepockets
@sidepockets

Posts: 19
Joined: Jun 22, 2012
Posted by @sidepockets, Jun 22, 2012

Dear Power:
So true what you have expressed and I could not agree more. I now write everything down and I make the Dr. take it. I want it in my EHR’s and they are coming real soon. So, straighten out these hapless professionals. If I had done what they do in my career I would have been bounced out on my ear.


powerofpositive
@powerofpositive

Posts: 55
Joined: Nov 04, 2011
Posted by @powerofpositive, Jul 9, 2012

Yes. I completely agree, it all must be straightened out, but the process is utterly fustrating and so horribly time consuming. I have thought at times to just ignore it. But because I was such a stickler for notes (was a nurse) being accurate and objective so the patient is properly advocated for, I expect no less from others. Not a tall order at all really from where I came from, but obviously it is from many others. And not only would I have been tossed out for such sub-par work, I wouldn’t have been able to consiously do that : slighting my patients.
We need complete-open-communication with all aspects of our medical records. I currently have to deal with a third party in obtaing them and by golly they never send the proper notes, and then to tend to the errors/adendems etc., It is a hefty portion of time wasted/working on something that is so vitally important, yet continues, is fustrating, and is counter productive in stress levels…which isn’t helpful for ill people. Proper documentation is a basic right of medical care! It should not be an exception. We all make mistakes, but this is to much!
I bought a small recorder recently so that I can bring it to visits, announce the visit will be recorded and see if this helps the situation.
We should all be accountable for our actions/work. We pay dearly for healthcare and such a broken state it is in. Since records are going national and there is legisation underway that will enable law enforcement to extract information, (medications/conditions etc.) then it is imperative that they be correct, for many reasons….the first and foremost being our own health advocation.


sidepockets
@sidepockets

Posts: 19
Joined: Jun 22, 2012
Posted by @sidepockets, Jul 10, 2012

You are a Maverick in your actions and I commend you. I learned a lot here as well. I am also tired of being ignored and treated like an incorrect medical record. We are lucky to get 15 minutes out of a doctor. Now really, the only way we can fully tell a doctor what is wrong with us is to write it down, have him read it. Sure, he/she will read it. LOL. and then leave the doctors office. All of these autoimmune diseases have very, very, weird symptoms. Some I hated to discuss because in the back of my mind I know they are thinking, (liar, attention seeker, hypochondriac, histrionic, menopausal, neurotic, crazy, woman). Funny though, for twenty eight years in a high powered, male dominated profession no one ever looked at me that way. Not until I became sick, did this industry of health professionals make me despise them. I like your style and passion to our plight. We have to start demanding respect from these so-called professionals. I guess I need to start pulling more of my records. I already have a 50 pound box, literally, no joke. Thank you for the education as there is nothing more powerful than being armed with knowledge.


Marilly
@marilly

Posts: 7
Joined: Apr 14, 2012
Posted by @marilly, Jul 10, 2012

You go girl! 🙂 I’d never thought of recording a visit. I’m sure some doctors would be horrified. We really need a printout of every thing that is written or recorded electronically as well to be on the safe side.

I think cut and paste has become standard along with incorrect or misspelled medicine names. On a followup visit, I discovered that one of my blood pressure meds was incorrectly listed in my chart. The aid who took my blood pressure and listed my meds was not listening and wrote down what she thought I said. Since she is not a nurse or doctor, she doesn’t know the drugs and had no idea what she had done. I shudder to think what other errors are made on a daily basis.


sidepockets
@sidepockets

Posts: 19
Joined: Jun 22, 2012
Posted by @sidepockets, Jul 12, 2012

Hi PowerofPositive:
Just checking in to see how you are? I am pretty much the same. You know, everyday can be a struggle. So much garbage. We tried so hard to be perfectionists trying to accomplish and end goal and always there is an incompetent or road block in our way. What has happened to the integrity of our society. Do you remember when people cared and listened to you and they actually relayed accurate information? Oh, the good old days and how we long for them. I read these posts and from the nuances I am picking up we are a group of intelligent people here. No baloney, just women possibly some men, looking for help that does n’t seem to come. Yes, with a lot of autoimmune diseases comes depression, why I don’t know. I have read and I wish I could quote from it but the brain fog takes over —– a lot— that the brain actually suffers from inflammation as well. They did a study and they used fairly high doses of steroids that appeared to relieve the symptoms of cognitive impairment. In my humble, non medical opinion, even though I read so much I think I could have taught these doctors a thing or two. I believe, there would have to be a depression in the mix. Any disorder that can potentially hit the brain and cause cognitive difficulties which slows our thinking would have to bring on episodes of depression. Take a look at Alzheimers patients. Another lovely disease process. This is known to cause depression. I have watched enough family members with that. Forgive me if I sound bold, this has always been my personality. There were times which I could not believe, I actually stated, to one doctor, that he was lacking in education as I was walking out his door and I watched his mouth drop. I was not always a bold personality until I realized if I did not speak my mind nothing would change for me or anyone else seeking the truth. I believe docs have a speech that they use on the patients that they find trying so they can go on to something that is easier and less taxing for them to accomplish. It is though they look for instant gratification in their practice. Pick the easy stuff as it is quick and easy. Just dump the difficult and hopefully they won’t come back. You know, almost like a sales pitch. I know for a fact not all doctors are like that however there is a large percentage. This disease and others are starting to receive respect. A very large Metropolitan Hospital has a building specifically for Sjogrens patients staffed with Rheumatologists. Opthamologists. Neurologists,Oncologists and many other specialists to treat and cornfirm this diagnosis. I know this as I called them. I can’t state who they are as this I am sure would be a conflict of interest on this site. America is finally picking up where the Asian Countries have been studying and developing new drugs for this disorder as well as Lupus, R/A. America is not the trail blazer of this disease. Two Asian doctors diagnosed me. One doc of Indian descent and one from China and they knew all about it. Hugs to you. Dee


sidepockets
@sidepockets

Posts: 19
Joined: Jun 22, 2012
Posted by @sidepockets, Jul 12, 2012

Yes, I have been shuddering for years,regarding your statement regarding errors. In my opinion, this is utterly a disgrace. I have watched this for decades. I handled the care of my ailing mother for years. I had more screaming matches with Doc’s than I would like to admit. Sometimes the words that spilled out of their mouth’s or their nurses were complete lack of regard for their profession. For those of us who are perfectionists and on this site, and I don’t know why there appears to be a common thread of perfectionism. Can this possibly be a personality trait of this disorder. I do know that certain traits go hand in hand with some illnesses. Need more research on that one! I am not an belligerent personality but I am intolerant with a profession that demands respect but does not give any in return. Where is the fairness here? We deserve so much better. We are supposed to be dedicated to what we do for a living. Have we lost the intelligence that once graced this planet. Or have we just become complacent? Sorry, I am venting again. However, do we deserve this type care and disinterest from professionals. I definitely think not. I do not want to leave this earth as my mother did. Neglected in a nursing home. whenever I had to attend to my career and family. I felt like a prison warden overseeing staff at a nursing home that cared only about how much overtime they could collect. What is wrong with this picture? I can’t be a doctor, lawyer, chief, cook, and bottle washer for the rest of my life. I now have to take care of me and have compassion for mankind. Alright, I am off my soap box. Thanks for listening but what I read here makes me see a commonality that is not what we deserve. I do know now, that I was not alone in this very difficult plight of ours. Take care all. Keep the faith and believe in yourselves. You really are not alone. Hugs to All, Dee


Racheyathome
@racheyathome

Posts: 1
Joined: Mar 17, 2013
Posted by @racheyathome, Mar 18, 2013

Why would this sjogrens ‘wing’ at a metropolitan hospital include oncology? I understand the other related docs like rheum and opth.


Marilly
@marilly

Posts: 7
Joined: Apr 14, 2012
Posted by @marilly, Apr 15, 2012

Hi – I was never given a definite dx of Sjogren’s, but my Schirmer’s (sp?) eye test showed severe dryness, and I have been dxd with several other autoimmune diseases. Is there a specific test for Sjogren’s? I use Restasis and have had my tear ducts plugged. My eyes are better since the tear ducts were plugged, but I still have to use drops frequently. Fatigue is my biggest complaint. Anything I do tires me out to the point that I have to take a nap. It’s very frustrating. I’m wondering if there is anything I could take to improve my stamina. Currently, I take Imuran. It may control some symptoms, but I feel terrible and am very limited in what I can do.


Meredith0903
@meredith0903

Posts: 5
Joined: Apr 12, 2012
Posted by @meredith0903, Apr 16, 2012

I was diagnosed after an exam, Schirmer’s test and a biopsy. ( They took a piece of tissue from the inside of my mouth.) There is no one test for Sjogrens, rather a combination of symptoms and tests to determine a diagnosis.


Marilly
@marilly

Posts: 7
Joined: Apr 14, 2012
Posted by @marilly, Apr 16, 2012

I hope this is the right spot to post a reply to Meredith0903 and Marian Green. Thank you both for replying. I think my dx was based on the Schirmer’s test, blood tests for inflammation and the fact that I have other autoimmune diseases. As I said, my fatigue is debilitating. Of course, I’m 72, so that’s part of it, too, I’m sure. What medicines do you take?


sidepockets
@sidepockets

Posts: 19
Joined: Jun 22, 2012
Posted by @sidepockets, Jul 10, 2012

Marilly,
Yes, there is but it sometimes does not become sero positive for a while as in my case, I just think the blood labs stink! The test is under two categories; Category A, Systemic Lupus Profile A which has seven specific tests.RNP Antibodies, Smith Antibodies, RA Latex Turbid., Antichromatin Antibodies, Sjogren’s Anti-SS-A,
Sjogren’s Anti-SS-B; Anti-DNA (DS) Ab Qn. If you are positive for Sjogren’s SS-A they say that is is secondary to another autoimmune disease. I wonder about that though. It does not make any sense in my case. I am told I have Primary Sjogren’s Anti-SS-B. Next Profile Systemic Lupus Profile B; Complement C4, Serum, Complement C3 Serum, ANA Direct. A “Vectra DA” test was performed on me to see disease activity in my body. This is normally used to follow Disease Activity in R/A patients this test is not a definitive test for R/A it monitors activity and response to chemical treatment you are receiving. Mine came back moderate/high while taking methylprednisolone. The Plaquenil worked very well with me, albeit a short time. I felt like my old self again.But I am supposed to be on an autoimmune cocktail of drugs. Medrol, Plaquenil, Methotrexate. I cannot tolerate the Methotrexate. Allergic to that stuff. It has just made me very sick again. I am now on high dose of Prednisone now. I feel crappy again. I was told that I need to be on a biologic such as what you are on. Sorry, just can’t afford it. I know you feel terrible because that is what this disease can do. I know your frustration and agony. Don’t you just get tired of dragging your body around like a rag? I call it the slow burn. Like you are slowly losing yourself. I wonder just how debilitating this can get. As though it is not debilitating enough. I don’t know what to do about improving your stamina, I fought this symptom for years and I have lost the battle. I try to just pace myself and if the dishes don’t get done or a load of laundry does not get done I figure it will still be here no matter what. So, I just shut the door or close my eyes to the mess. I do what I can. I used to be so active, as I am sure you were too. That is what we miss the most. Who we used to be. Hang in there, we need to adapt no matter how hard that is. I know I am still in the denial stage. I am sure one day I will get there. Life is a tough road. They said it was n’t going to be easy and they were n’t kidding. Keep your chin up and push those doctors for answers. If we all push together we may all accomplish the impossible.


Marilly
@marilly

Posts: 7
Joined: Apr 14, 2012
Posted by @marilly, Jul 10, 2012

sidepockets – Thanks for the response. I don’t recall whether those specific tests were done or not. I will check on that. I did not have a biopsy of lip tissue, which someone else mentioned. I know the presence of my other autoimmune diseases – relapsing polychondritis, vasculitis and Crohn’s – complicates the issue. I thought when I got my intestinal bleeding and anemia under control that I would feel better, but it didn’t happen. I do get tired of dragging myself around, like a rag, as you say. It is also embarrassing, because I don’t look sick! I’m sure there are people, maybe even doctors, who think this is largely in my head.

Take care, and thanks again. I had given up hope of ever hearing from anyone!


sidepockets
@sidepockets

Posts: 19
Joined: Jun 22, 2012
Posted by @sidepockets, Jul 12, 2012

Hi Marilly,
It’s Dee again. I am like a kid in a candy store since I found this site. I felt like an alien with this disease. My heart goes out to you and everyone here. Oh, you are not sick enough let’s throw Crohn’s into the mix too. My brother in law had this in the 70’s and nearly died because they thought he was faking. Faking, really? He was 6’2, weighed 220. Became so weak he could not brush his teeth. All he could do was lay. My sister has this disease too. Just having Crohns can put you over the edge. My brother in law was saved by high dose steroids at the time. And now he is having his 60th birthday in a few days. He is taking the drug called 6MP; also known as Mercaptopurine. It was tough for him to take it but he hung in there and finally after all the operations and only a couple inches of intestine left he is stable. He was not supposed to live this long. He ran a Crohn’s support group. At his worst he was 105 pounds. I was watching him die as a teenager. I know the old “Oh, you look fine routine.” My brother-in-law looks better than ever now. At 60, he looks about 40. He can exercise now and follows a strict routine of rest, exercise and limits his activities every single day. I give him credit. I am tired of people saying I look great. I am going to start carrying a picture of myself around before I got sick and ask them if I still look the same. What a contrast. I look old and haggard at 54. I should not look this way. But they still say, “You look great”. No, I don’t. I look horrible. We always say to ourselves, if they can fix this I know I will feel so much better. I am tired of waiting to feel better and I am coming to terms that this may be as good as it gets. Ugh! Don’t worry about the doctors and what they think. I know we need them for our health care which of course is very important. But these folks are not living what we live and they really cannot relate at all. It must be nice to be healthy with a great career. I know I miss my career. You have so many autoimmune diseases you have to be struggling. This is very common to have Sjogrens with these autoimmune diseases. I don’t know how to put on a link but go to Sjogrenssyndrome.org they have a great video and a wealth of information. Some authorities call this an orphan disease. It really is nt it is just not diagnosed and women primarily get this. So, there are 2 strikes against us. I wish you well, stay strong, take care and be kind to yourself. Everyone with ill health needs support. People need to understand that too often we are pushed aside because we have a chronic illness/illneses. I believe doctors get annoyed if it is nt something they can fix with an operation like appendicitis. Is there really people out there that think we would want to live like this? I want my darn life back. I had a great life. I loved life. I was blessed. Now, this is my cross to bear. So, we need to make the best of it and enjoy every moment of relief we get. Write soon. I now feel connected to the rest of the world again. Hugs to you, Dee

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