My Sjogren's Journey

[BLHutch]

Friends,

I am a 38 year old man with primary Sjogren's Syndrome. I thought I'd share my story of how it came to be diagnosed in the chance it might help someone else. The funny thing is, my pathway to diagnosis came about after I made an offhand comment to my ENT doctor. I was in her office in June of 2015. We were talking about my acid reflux. I have the laryngopharangeal kind, not the GERD kind. Anyway, I made a comment about how my mouth wasn't producing any saliva. She said "Didn't I see something in your chart about your mother having Lupus?" I said yes, and she said she wanted me to have an antibody test just to rule out any autoimmune disease. I have a back injury and so I take medication that causes dry mouth, so she wanted to make sure it was just a medication side effect.

I had the test done. It was positive for ANA antibodies with a 1:80 dilution and a nucleolar pattern. But it was negative for Sjogren's specific antibodies. In between the test and my follow up, I started to have crushing knee pain. Really bad. I saw an Ortho and he sent me for MRIs which came back normal. I mentioned my blood test and he said "See a rheumatologist." At my follow up with my ENT, she confirmed the need to see a rheumatologist. I wanted to see the same one my mother goes to, since she's a really good doc, so I had to wait six months(!) for my appointment!

She ordered a lip biopsy which my ENT did, and it came back positive. So my rheumatologist confirmed me being a Sjoggie. She told me I am sero-negative since, as of yet, I do not show the Sjogren's specific antibodies, but she also said that can change. I feel extremely fortunate that only 9 months passed from the time I made my comment to the ENT to the day I got my diagnosis. I've met others that have lived in limbo for years before it was properly diagnosed. Since a lot of doctors don't see very many male patients with Sjogren's, the fact that my ENT was on top of things is definitely a blessing.

I had a laparoscopic hernia operation back in November. When I was going over my history with the pre-op nurse, she said she'd never seen a male Sjogren's patient and went and got some of the other nurses to meet me. I felt kind of like a celebrity! They took good care of me.

So the moral of my tale is mention any new symptom, no matter how small it may seem. In my case, a random comment led to a diagnosis.

Lee

[SunshineDaydream]

Welcome to the forum, Lee! Good thing your doctors are so attentive and responsive which enabled you to get a quick diagnosis.

[WhatYouSjo]

Welcome Lee. As a seronegative male SS patient who is younger than you, I know the challenges in obtaining a diagnosis. I'm glad to hear that you had a relatively quick diagnosis. While certainly a minority, I don't think male SS patients are as rare as is commonly thought; rather, I think that we are much less likely to be diagnosed due to inherent biases in the medical establishment. I've encountered a number of young men who have seronegative SS; perhaps we are just less likely to develop antibodies. Unfortunately, there are few studies on the differences between male and female SS patients.

At any rate, I hope you find a treatment plan that works for you.

[irish]

Glad to hear that you had such a fast diagnosis. You really lucked out having an ENT who not only listened to you but had the instinct and knowledge to get the blood work done.

I have to add, with 2 males on this thread so far, that this sort of throws out the menopause and female hormones causing Sjogrens. Irish 

[Joe S.]

Welcome to the forum.

[Nymph]

Hi Lee and welcome!

I'm 38 too and it is always good to see someone who is diagnosed outside of the usual sex and age parameters. I think that rheumatologists are starting to catch on to a more complex and helpful view of Sjogren's. Your ENT sounds like a great one to catch your family history and put it together. I could have probably been diagnosed five years earlier with an ENT like that. So congrats on the quick diagnosis and good luck on an effective treatment plan. I really believe that early treatments can slow down progression of the disease.

Best,

Nicole

[BLHutch]

Thank You All,

Once you get diagnosed with something, you tend to look back on your life and see signs of it that have been there for a while. In my case, that's certainly true. Muscle aches and joint pain have plagued me for a good chunk of my life. I was a firefighter and then a police officer, so I just assumed it was because of the job. I worked out and boxed on the departmental team. But it seemed like I was always dealing with some muscle or joint injury. After I was injured in the line of duty, I assumed any pain or fatigue was due to the injury. Come to find out, that may not have been the case!

The most frustrating thing for me is brain fog, which may or may not be connected to my Sjogrens. I take Lyrica due to my back problems and it can cause the fog. I've also have a concussion history (2 in high school football, 1 as a firefighter, 1 in the ring, and then a serious one, a full blown TBI, from my injury) and that can cause it as well. I use to be able to read something and quote it verbatim, even a week later. Now, I walk into a room and forget what I went in there for in the first place. Thank God for sticky notes!

Dealing with my physical injuries involves constant 24/7 pain and requires most of what little energy I have. When I got the Sjogren's diagnosis, my first thought was "This? On top of everything else?" I really didn't know how I was going to cope with this additional hurdle. But I have my wife. And my cats. So I just take it one day at a time. That's about all I can do.

Thank You Again,

Lee

[Kathy57]

Wow!

I am impressed by your ENT.  You were lucky.  My former ENT not only screwed up my diagnosis, but talked me into complex and costly surgery just to line his own pockets.  My surgery was a complete mess and I am left scarred and hurting for life.

I've since been to three University ENT's and plastic surgeons who have told me that the surgery was not only unnecessary but not fixable.

I lost my job.  I lost my health, because my symptoms were a hundred fold worse after the traumatic and disastrous surgery.  I'll never trust another surgeon again.  This man figured out that I had an autoimmune disease after the fact but did nothing to help me or refer me for help.  A true sociopath and shame on me for being fooled.

He tried to take me back to surgery again but that wasn't going to happen!

So glad there are good doctor's out there because there are some who are just psychopaths!!

Welcome to the forum and consider yourself truly blessed for your quick and competent diagnosis.

Kathy

[felpeyu2]

Hello. I am 44 years old. Male too. I was diagnosed ten years ago with something like you have an autoinmune illness like lupus or something similar that turned out, at least for the moment, to be sjogren. But i had strange symptoms during all my twenties and remember going to different doctors for apparently different issues and the outcome was always the same: there is nothing wrong with you. There was an important issue those previous years that I was not realized at that time and had a very important impact in my personal life: my energy was lower and lower.

In my case the diagnosed was because I had this flare: pain in almost all of my joint that lasted for weeks and was increasing with every day. Add to this thing that I had the previous years several corneal abrasions and that I was at this time very very tired.

[Carolina]

Dearest Sjogren's Angels,

I think we may be seeing a new generation of doctors, ones who know about AI/I diseases, and the signs and symptoms, and the tests.  So perhaps the era we knew, of trudging from doctor to doctor, undiagnosed, untreated and disrespected is slowly dying away.

It takes a long time for new information to make its way into the overcrowded curriculum of medical schools, but when it does, it makes a difference in how medicine is practiced.

And once the doctors who know about AI/I conditions are practicing, they will often share what they know, and influence younger doctors even more.

I make it an absolute rule to choose doctors who are young, with training at highly ranked medical schools, and fellowships in their speciality, as well as doing their residency in the field.

My new epileptologist (yes another ologist) finished medical school in 2010, his residency in 2014, and his fellowship at Duke in 2015. So in all probability he is about 32.  Just the right age, although I see doctors up to about age 45.

Welcome, Lee.  There is plenty of life after Sjogren's.  However, Sjogren's may make it difficult to engage in activities that might put too much strain on your ligaments and tendons as they are often affected by the disease.

Find a pain regimen that works for you.  Sjogren's causes inflammation and inflammation causes profound fatigue, pain, and depression.  Cymbalta is on label for Pain and Depression, for example.  I took Aleve regularly for 16 years, but eventually it was too much for my stomach, even with Omeprazole and I had to give it up. 

You will find what works for you.  Pacing yourself, meditation and relaxation. exercise in warm water is wonderful for many of us, and remembering to breathe (Joe S. is the guru of breathing for us) are all techniques.  But there are many others.

If your eyes and skin are dry, a humidifier in your room is essential.

There is a marvelous amount of information wisdom and support here.   Keep us posted on your life.

Hugs, and welcome, Elaine

[finallyadx]

Welcome - you will find members supportive, kind and informative.  So glad to hear that your journey to diagnosis was not a long one.  Some of us took quite some time to find out what we had - which caused more anxiety and stress than necessary!

[MirkeshCat]

Thank You All,

Once you get diagnosed with something, you tend to look back on your life and see signs of it that have been there for a while. In my case, that's certainly true. Muscle aches and joint pain have plagued me for a good chunk of my life. I was a firefighter and then a police officer, so I just assumed it was because of the job. I worked out and boxed on the departmental team. But it seemed like I was always dealing with some muscle or joint injury. After I was injured in the line of duty, I assumed any pain or fatigue was due to the injury. Come to find out, that may not have been the case!

The most frustrating thing for me is brain fog, which may or may not be connected to my Sjogrens. I take Lyrica due to my back problems and it can cause the fog. I've also have a concussion history (2 in high school football, 1 as a firefighter, 1 in the ring, and then a serious one, a full blown TBI, from my injury) and that can cause it as well. I use to be able to read something and quote it verbatim, even a week later. Now, I walk into a room and forget what I went in there for in the first place. Thank God for sticky notes!

Dealing with my physical injuries involves constant 24/7 pain and requires most of what little energy I have. When I got the Sjogren's diagnosis, my first thought was "This? On top of everything else?" I really didn't know how I was going to cope with this additional hurdle. But I have my wife. And my cats. So I just take it one day at a time. That's about all I can do.

Thank You Again,

Lee

Hello Lee and welcome!

Your story really hit me. I am 40 now but was dx?d in 2012 when I was 36. I am positive that I must?ve been sick with SJS a long time before the official diagnosis. So, what really hit me was that you were a fire fighter and a police officer. Me, I was a paramedic and firefighter here in Germany. There?s no way I can return to either of these jobs. My worst problem is fatigue and you surely know how physically demanding our jobs are. I am on SSDI. I wonder, how do you cope with all of that? For me, it was like I had lost all of my sense in life. My job and my various hobbies (running, swimming..) are all but impossible with the fatigue.

My hint to you: Hang in there! You sound like a strong person and you will cope!