Onset Stories

I have decided to include the Onset Stories of mine & other Sjogren Patient’s disease processes. Why? Because I think that it helps to see the early/ongoing presentation of the Sjogren’s Patient. Some folks will insist that they have had their many symptoms since childhood, while the medical information that is currently disseminated tells us that the syndrome typically develops between ages 30 and 50. So which is it? I’ll report, you decide.

The following stories were submitted to me and appear as they were written:

From Elisa:

Over at Sjogren’s Style (http://sjogrensstyle.blogspot.com/), I write about living life well despite AI disease. I want to thank SjoDry for inviting me to tell my story here and thank you for reading it!

When I was twenty-seven, I considered myself a healthy person, and it had never occurred to me to think otherwise. Not when I started noticing myself breathing strangely when I exercised, not when I developed pleurisy (inflammation of the lung tissue), and not even when I developed pleurisy again. Pleurisy was the worst pain I’d ever felt in my life, but I still thought of illness as something transitory and none of the doctors I saw indicated that anything more significant might be going on. Sure enough, though it took a few months, the pleurisy eventually went away.

I thought I was “all better” until one day, feeling great and in better physical shape than I’d ever been in my life, my hand started bothering me. “It feels like I was bit by a spider,” I told a friend.

The next day, everything changed.

I was only twenty-eight when I woke up feeling stiff throughout my whole body. Every joint hurt, from my toes to my neck. I could not fathom what was happening. When I called my general practitioner (GP), I actually hesitated to make an appointment when they said they couldn’t fit me in for a few days. Of course, the pain would be gone by then. Right? Wouldn’t it be? Of course it would.

Except that it wasn’t. My GP felt my joints and told me that he thought it was Rheumatoid Arthritis and that the fast progression was a serious concern. I would likely be facing life in a wheelchair if we didn’t figure out how to stop it.

So I was actually happy when the blood tests came back and the only real abnormalities were something called ANA and my Thyroid Stimulating Hormone (TSH). My TSH was just barely out of range, but it looked like Hashimoto’s (autoimmune hypothyroidism) was the most likely culprit. One other blood test, Anti-Ro/SS-A, was also positive, but my doctor assured me that though it was related to a disease called Sjogren’s Syndrome, it might not mean anything.

A few weeks on the thyroid medication and I felt great again. My GP sent me to a rheumatologist to follow up on the other blood tests, but he was rude and dismissive so I didn’t look into it further. I thought my problems were more or less solved anyway.

A few weeks after that, though, I developed yet another bout of pleurisy which led to a bout of pneumonia. I started to feel truly afraid that I might be dying, that my body was just starting to give out for some reason.

Fortunately, the pneumonia cleared up and life pretty much returned to normal. I wasn’t entirely healthy, but I attributed lingering symptoms to my failing thyroid.

In the meantime, life went on. Work was great, and I fell in love with an amazing man. A few years went by, and we got engaged. But just a few months before the wedding, my body started acting up again.

My eye doctor said, “It looks like something autoimmune,” and my GP agreed. The ophthalmologist I saw next openly laughed at them both, insisting it was my thyroid, but he was proven wrong and they were right.

My ANA was higher than ever, my SS-A was still high, and I had Sjogren’s.

Since then, I’ve spent a lot of time learning from other patients on the Sjogren’s World forums, which is where I met SjoDry. I read everything I could about my disease, asked as many questions as possible during my doctors’ appointments, and started writing about autoimmune disease, a hobby which led me to recently start my blog. I’ve become conversant in the language of blood tests, antibodies, disease, and medications. I’ve also come to realize that I’ve had symptoms of autoimmune disease since childhood: intense pains that my mom told me were from growing, periods of crushing fatigue, Raynaud’s, and cold intolerance to name a few.

I can’t consider myself a healthy person anymore, but I’m proud of the inner strength I’ve discovered within myself. I feel lucky that I have found myself in good company with other strong, determined people in the autoimmune disease community and that we can support each other online and in person.

Telling my story used to make me sad, but I have found a place of acceptance. When SjoDry asked for people to share, I volunteered because I know how much comfort I’ve found in the stories others have shared with me.

I’m looking forward to reading more stories here, and I hope that you will visit me on my blog!

–Sjogren’s Style

From Diane:

I felt like crap for a few years before my diagnosis,(and in fact I had a liver biopsy because of crazy enzyme numbers for years….5 years ago I was diagnosed with Autoimmune Hepatitis) but the final straw came a couple years ago when I got some kind of intestinal infection.

I was on antibiotics all summer and felt like I had the worse case of flu. My body and joints hurt and the constant antibiotics were tearing up my bowels.  My doctor was out of town and I had to see an associate….she ran all kind of tests and of course they came back negative. She made me feel like I was some kind of hypochondriac. Anyhow, my eyes were terrible…I could hardly keep them open, I made an appointment with my eye doctor and he did a Schirmer’s test and said I had the worst case of dry eyes he has seen in a long time.

He suggested that I had Sjogren’s and for me to go back to my doctor. Luckily, my doctor came back from vacation took one look at the inside of my mouth, my swollen paratoid glands, and said….”You need to see a Rheumatologist ASAP.”

I told him that his associate ran tests and they all came back negative and my doctor replied “50% of Sjogren’s patients are sero negative in the testing….you need to be seen because I agree with your Opthalmologist”…..that was the start of my journey 4 years ago!

So now my life seems to consist of constant medical tests, doctors appointments and a pharmacy of drugs I take on a daily basis. I try to make the best out of my life. When my body says slow down…..I listen!

 

From Susan P:

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9 Responses to Onset Stories

  1. Thanks for sharing my story, SjoDry!

  2. John B says:

    Will be interested to see how your trip to NIH goes. I go there in March. I’m in that floundering stage you speak of. Hope I’ll have a better understanding after NIH.

  3. Heidi says:

    I suddenly came down with what I thought was an upper respiratory infection…it went on for a couple of weeks and I started antibiotics…within 24 hrs – my mouth and throat went completely bone dry. No one knew what was driving this and needless to say it took awhile to get into enough docs I finally had a lip biopsy done…incorrectly read by the first lab who had it, was later sent to Baylor and came back as a grade 2. Strange thing in reading the story above I did not notice anything wrong until this, and when I was 52. However throughout my life I have struggled with constant dental and sinus/ear infections. When I was in high school, I got pleurisy which I now understand normal people just don’t come down with suddenly. I also suffered from endometriosis and fertility issues. Twice also when I was a teen – I came down with quite serious illnesses – mimicked Mono or toxic shock…never got a diganosis but did recuperate…So makes me wonder if I have had this all my life, or was predisposed? Thanks for sharing-

    • vitalsignspgh says:

      Wow Heidi…we kind of sound like twins.
      I have lived everything you mentioned complete with pleurisy, IgA Deficiency & even had a lung removed.
      Did the ‘beyond depressing’ infertility thing also. Isn’t it crazy. All of these things that no one
      put together throughout my life. Here a symptom, there a symptom, but never a diagnosis :-/

  4. Susan Pope says:

    I really enjoy hearing other peoples stories. It lets some of us know we are not alone, or reminds us to think about some symptom we may have over looked when hearing about yours. Thank you.

    SusanP

    • Susan,

      I do as well. I think it helps us when we see other stories which may be similar to ours. Also, it clearly demonstrates that we are not alone in our experiences.

      SjoDry

  5. Deb says:

    Hi. I’m symptomatic and recently it feels like my eyes just stopped producing tears! Punctual plugs are in and I’m struggling. Lots of urinary symptoms. IC, frank blood, joint pain etc. can Sjo present with dry eyes OR dry mouth or must both happen at once? I have elevated ANA’s & ribonucleic antibodies too. Slightly low thyroid.

    • Deb,

      So sorry to hear you are struggling in so many areas. Such is our Sjoggie Life, right?! It can certainly become overwheleming when everything hits at once. On the one hand, I am used to it after so many years of living it. But on the other hand, I just want to scream some days…enough already…just at least let me have a breather for awhile. I hope you get some relief soon.

      Take Care.
      SjoDry (Sandy)

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