Hi all
today at work I met a patient that has sjogrens. she was telling a co-worker about her sjogrens..about she has never met or heard of another sjogrens person. my co-worker said well I will bring someone to you right now.
we talked and she was glad to meet me...only wish I could of talked longer.
her story is...she is in her mid seventies...diagnosed 10 years ago...main symptom then was elbow pain.....I asked her what meds was she on and she says I don't take anything for it.
her eyes looked clear and shiny.
i wish I had the time to ask her if she ever took prescriptions in the past and how exactly is her eyes and mouth. shes going to ask for me at her next derm appt and I intend to get all her story.
I think meeting me made her day,,,i was able to share alittle info on my own trials with it.
how many others here on the forum have actually ran into a fellow sjogren unexpectently? as you know we are "rare"
eye2dry
Interesting! I bet that was really a good experience for her. It is always good when we feel less alone in the world not matter what our struggle. It is funny how you focused on how good her eyes looked because I can relate, often finding myself staring at how beautifully someone's spit fills their mouth and glistens on their teeth as they speak, fantasizing about the spit, the whole while they have no idea that I am really not listening to them at all, just staring at their spit!!! LOL! I am in a parallel universe sometimes.
Strangely enough, one of my personal friends has Sjogrens. She was diagnosed a few years ago, and I didn't pay too much attention because I really thought it wasn't too big of a deal. How wrong! I even apologized to her, wishing I had paid more attention and offered more help. She is having great success on Plaquenil and leading a really full life now. I hope that will be me soon!
Actually, part of my denial was that I couldn't possibly have sjogrens, too, because I already knew someone with it....statistically speaking I couldn't have it too, right? :p
When I went to the opthamologist last August, I met an assistant that has sjogren's. She complained of joint pain which has subsided since plaquenil. My peditrician's mom had it and one of my co-worker's mom also had it. Both my peditrician and co-worker have some sort of auto immune problem also.
Winnie
My very next door neighbor was Dxd about a year after I was (however, he has no eye or mouth involvement). And a friend of my husband's less than a mile away has it too. That made me wonder if it was something in the air. Somewhere I read there are more people with Sjs than lupus. It is not readily diagnosed I guess.
I ran into a woman at one of my water exercise classes who has Sjogrens. She also has a partial knee replacement which I also had at that time. I have another full knee replacement since I met her. I have not seen her since, but she probably still goes to different classes. Lucy
A couple of years ago I tested positive for Lambert-Eaton syndrome after I had already had positive tests for CREST syndrome, lupus and sjogrens. Because LE is related to cancer my doctor had me get all of my cancer screenings updated. The tech at the clinic where I get my mammograms done asked me why I was having it several months before it was due. I told her about the Lambert-Eaton antibody and the others and that the only symptoms I had were related to the Sjogrens. She told me that she has had it for several years. She said none of the drugs seemed to help her (she mentioned Plaquinil and Evoxac) but her worst problem seemed to be her eyes. She used Restasis and several OTC eye drops but twice in a few years she had awakened to find her upper eyelid "glued" to her eye and had to have emergency treatment to unstick it. She told me to protect my eyes at all costs.
Karen R
My mother was diagnosed with sjogrens about 10 years ago( but had symptoms for about 5 years prior) when she was diagnosed with Primary Biliary cirrhosis.We are both convinced my maternal grandmother had it as well as the RA she was diagnosed with.
I have a co-worker who was just diagnosed with it about two months back. She has no eye or mouth involvement yet just joint pain in her hand at this point. Her daughter has lupus.
I have a long time friend who I knew had struggled with lupus for about 20 years- She had a kidney transplant 3 years ago- I just recently ran into her and i told her my own health woes. I was surprised to learn she also has had sjogrens for the passed ten years.
Yes, I think if we had a " special button" to wear to be able to visually discern who had it, there would be far more buttons out there then we know.
My Mom was diagnosed with Sjogrens and Hashimoto's Thyroiditis in her sixties.
I was diagnosed after her but I was in my mid thirties at the time and in a highly stressful job. I think I experienced more AI symptoms: fatigue, joint pain, brain fog, inflammation, peripheral neuropathy, trigeminal neuralgia and occasional difficulty walking.
Also, one of my sisters has recently been diagnosed with Hash. Thyroiditis and my other mentioned she has dry eyes and uses lots of eye drops (no Sjs diagnosis). I do not know if grandparents had similar issues but it would not surprise me if they did.
I met a woman at work that has SJS. She teaches spin classes at the gym and says that SJS is mostly in our heads and that we just need to sweat and we will be OK. She suffers from dry eyes and mouth and swears contacts help her eyes from drying out.
So I'm thinking she is not extraglandular - just sicca symptoms. I can't imagine that understanding if she was dealing with physical pain, so she must not be having those sorts of issues. Which I'm glad for her - she's really a neat lady.
I met a woman on Craigslist who has Sjogrens.
She advertised a vintage coat. I had an Dr. appt so I met her. She was moving and mentioned she was on Disability due to AI issues. I said so was I too, (that was why I kept getting lost and calling her...lol)
She is the person who told me about the Sjogrens Center...said I was wasting my time with Drs.
Actually, when I left her I sat in my car. I was dazed by her energy and agility...
My aunt has it, but I've never met anyone else until I found you guys. I love this place <3!
My new gyn office has a nurse practitioner and when she saw my diagnosis she told me she has it too. Along with Lupus. She was on Plaquenil for a long time and had to come off of it due to eye damage so she was warning me all about that. But it was so nice to meet someone else who is going through it. I was able to give her my Rheumy's name/number so she can see him now. She's had a rough time with finding a good one.
My next door neighbor down the road has had sjogrens for many,many years and was diagnosed with it back then in 1970's, I believe. She suffered terribly from arthritis in her feet and GERD plus she could not sleep at night. Sound familiar. She is a retired RN also and she worked nights much of the time as she was awake then anyway.
One of the gals I knew in high school that was one year older then me and is also a nurse, plus we worked together about 30 years ago, she was diagnosed with sjogrens before I was. Her eyes were terrible and she has had the lung issues and some arthritis and other issues and also diabetes. We get out to coffee or a little road trip occasionally. I helped her daughter paint the inside of their new house about 6 years back. My friend was not in any shape to do it.
I also have a gal that went to my church for years and was diagnosed as RA for many years and treated with methotrexate, gold, prednisone, the whole shabang. Low and behold she was told that it was an incorrect diagnosis and she has Sjogrens. Her lungs are very bad and she has some issues that I don't hear much about on this forum. I can't remember the name of it right now.
Sooo, I have 3 people just in my area that I know of and it would be interesting to know if there are any more. There are a lot of us out there, but you know, we don't look sick, so if there isn't a reason for the person's health to be the focus of attention we never will know. Irish
Hi :)
I've met 3 other sjoggies. One through this forum and the other two while waiting for opthamology appointments. I got talking to people who kept sipping water!
Take care - Scottie :)
My story on this is as follows, My hobby is doing my family tree,
one day I received an email from a contact who turned out to be a relative through marriage so not blood relation,
I invited her to my home and on her third visit she said she was going into hospital for an operation on her arm as she suffered with arthritis, she asked me if I'd ever heard of SS, cos thats what she had, she was quite taken aback when I replied yes I'd not only heard of it, I had it too! Her blood Grandmother was my step grandmother, and suffered real bad asthma!
small world eh? Dolly x
I met one person who is the owner of a pharmacy. Her voice was very raspy, like mine and she came over to help me find eye drops with a bottle of water in her hand. I looked at my water, thought about my voice so I said - 'you have Sjogrens'. She looked shocked and said yes! She has had a terrible time with it, 9 weeks in ICU for ILD and another month in rehab.
She told me there is one other person somewhere but she did not know who HE was. Pretty amazing for my small town of 1400 people, though the county has 43000. Unfortunately she seems rather shy or uninterested in becoming friendly.
Gayle
I forgot to mention the lady I am refering to in this post:
she says she came down with Epstein-Barr virus and suffered with that for 2 years and then her sjogrens symptoms started.
From reading everyones replies....it seems like there are a lot more sjogrens folks out there than are being tallied up. It appears we are not that "rare".
eye2dry
I was diagnosed and work in a grade school. When I mentioned it to someone that person told me two others had it, too! I was kind of shocked. One, I think , is Secondary..she has a lot of RA issues, and one is Primary like me. Both are about 3-4 yrs older than I am. The one that is Primary has had several knee surgeries but insists that it is NOT SjS related, although she doesn't exactly know how her knee got so bad. Hmmmmm...lol...The Primary one and I used to talk a lot about our dry mouth, eyes, and the fact that she has met other SjS people with what WE think MAY be related....VERY hard to get numb at the dentist's office. Anyone here like that?? Anyway, she is or has filed for disability and will not be back, and the other moved to another school...I am A.L.O.N.E....LOL
I agree eye2dry. I think there are a LOT of people out there not realizing their symptoms are linked (like me for all my life) and a lot that are misdiagnosed. I had never heard of this disease until Venus got diagnosed. And I certainly never considered the thought of me having it...until I was diagnosed.
There's a lot of people suffering out there, and they don't even know there's help for them. I find that a horrible tragedy.
Sitting at lunch today, someone brought in icecream for the staff and I had to say "no thank you" due to my food allergies which many of my co workers know about. It is difficult to hide. I was sitting by my new boss and felt the need to explain to her later. As vaguely as possible, I told her some of my issues and she indicates having RA among other similar problems! I flat out asked her if she was on plaquenil and she said "yes!" What a small world. What is really wierd about this is that the other night I had a dream that my new boss had an autoimmune disease like me. :o
I think I can handle going back to work now. ;D
Winnie :)
Winnie~Pay attention to your dreams! Please let me know if I need to play the lottery! Work will be so much better with someone who understands!
Cat~ I have trouble getting numb for the dentist. I can't have most of what they normally use and the other takes 3 x's the normal amount...
eye2dry~ I had EB virus also, super high titers... but had symptoms before I knew I had it. Just didn't know what the symptoms went to...
That's amazing, Winnie!!
I hope our dreams don't always mean things. I dreamt the hospital sent me a letter saying I had diabetes. I was in the ER last Saturday and the dream was like Sun or Mon.
My glucose levels are always good, but I do have neuropathy. I think I was just worrying about it.
I've never met anyone with SJS!
Cat... yep, ME!
knee pain = Lyme most of the time and I made a rhyme .. gag me ;)
count me in on the hard to numb at the dentist
AND
my epidural didnt numb me, i broke the restraints coming up off the table when the doc cut into a "hot spot" during a C section
I am going to bed now...Maybe I will have good dreams about all of us being cured!! ;)
Winnie :)
Artist!!
I came out of an epidermal too! I was having surgery to remove ovarian masses... I can't have regular anesthesia...
Apparently I couldn't have an epidermal either...
hugs
Gayle
Since sjogrens I am VERY sensitive to the dental numbing. I start shaking throughout my body. Sjogrens has affected my central nervous system I am sure of it.
It's weird that a few of you have said that your mom has SS, too. Isn't it supposed to be pretty rare to pass it to one's kids? I have been saying for the past year or so, "I have whatever my mom has." We even have the same hip that hurts! Only she is 64 and I am 33. :P So the other day after my rheumy told me that I probably have SS, I had my mom watch the videos put out by the SS Foundation. The next day she said:
"Well, you didn't get it from me! I am healthy."
I said, "Even though you have all the symptoms?"
"Yes, even though I have all the symptoms."
So there you go. I guess the good news is that she hasn't had it very bad, so maybe I won't, either? I just know that I don't want to go through life with that little energy. If I have to be "sick" to get a treatment that makes me feel and function better, so be it!
It is so nice to meet someone who has what you do. Especially since it is not something that common.. They understand what you go through.. The other day I was getting my hair cut. Turns out the woman doing my hair has sclederma.. We were so happy to talk to each other and be able to understand what we both deal with and discuss doctors and such.. I could literally see the excitement come over her face when I said yes I have sjogrens..
Luna
My mom passed away in 2005. Looking back I think she also had Sjogren's. But I also believe she had Lyme disease. We were all exposed numerous times in the 50's and 60's.
I was dxd with SJS in 2008. I remember now her saying that it felt like sand in her eyes and she also had a dry mouth. She was ALWAYS drinking water (mainly because she was so dry.) They checked her for diabetes a million times. Never checked her for SJS, I don't think.
I can get numb at the dentist, but my liver is so well acquainted with the lidocaine or whatever that it processes it lickety-split. This can come in handy when I have a band rehearsal afterwards, as it is an interesting challenge to play a reed instrument with a half-numb mouth. Luckily, everyone is always clearing their spit valves...
Sharon