Red and the Big Bad Wolf

The story of me – Red living with Myasthenia Gravis or the 'Big Bad Wolf' as I prefer to call it

After being diagnosed with MG (Myasthenia Gravis) and Fibromyalgia I didn’t know that there was one more ‘final’ diagnosis waiting for me. And I refer to it as ‘final’ in apostrophes as I don’t know if one day there will be more. The reality is that when you have one autoimmune disease your are likely to get more autoimmune diseases or other systemic diseases.

I was doing fairly well managing my MG and Fibromyalgia and I was well into 2015. I had noticed that my eye sight wasn’t great, which I thought was due to the MG. I also noticed that my mouth was always very dry, as well as my skin. I didn’t think much of it as I was on so many medications.

I decided to see Dr. P (the Wonderful!) about my eye sight. After an examination she confirmed that it was not MG that was causing my issues. I previously had lasik eye surgery to correct my poor vision that I had since I was a child and she recommended that I see my opthalmologist.

Off I went to see Dr. H and after his examintation he confirmed that as far as my lasik surgery goes my eyes were fine. (Although I believed my night blindness was caused by this and is a common side effect. Something he didn’t want to acknowledge.) He did state that he believed that I had secondary Sjögren’s Syndrome as my eyes were exceptionally dry and that is what contributed to my blurry vision. Dr. H presribed several eye drops and recommended that I see my rheumotologist.

So I went to see my rheumotologist Dr. S and explained the situation to him. He examined me and then ran blood tests to confirm the diagnosis. And true as Bob I had Sjögren’s Syndrome! But what did this mean?

,Sjögren’s (“SHOW-grins”) is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies and lymphomas.

Although many patients experience dry eyes, dry mouth, fatigue and joint pain, Sjögren’s also cause dysfunction of organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. Patients also have a higher risk of developing lymphoma.’ (From the Sjögren’s Syndrome Foundation http://www.sjogrens.org/home/about-sjogrens)

The interesting thing was that ‘Sjögren’s symptoms frequently overlap with or “mimic” those of other diseases including lupus, rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome, and multiple sclerosis.’ Thus it was easy to miss as a diagnosis in my case.

In terms of diagnosis Dr. S ran the below blood tests and my ANA and SS-A as well as SS-B were positive – thus confirming my diagnosis:

  • ‘ANA (Anti-Nuclear Antibody)
    ANAs are a group of antibodies that react against normal components of a cell nucleus. About 70% of Sjögren’s patients have a positive ANA test result.
  • RF (Rheumatoid Factor)
    This antibody test is indicative of a rheumatic disease, including rheumatoid arthritis (RA), lupus and Sjögren’s. It doesn’t, however, specify which rheumatic disease a person has. In Sjögren’s patients, 60-70% have a positive RF.
  • SS-A (or Ro) and SS-B (or La)
    These are the marker antibodies for Sjögren’s. Seventy percent of Sjögren’s patients are positive for SS-A and 40% are positive for SS-B (these may also be found in lupus patients).
  • ESR (Erythrocyte Sedimentation Rate)
    This test measures inflammation. An elevated ESR indicates the presence of an inflammatory disorder, including Sjögren’s.
  • IGs (Immunoglobulins)
    These are normal blood proteins that participate.’

It is important to note in terms of a diagnosis that Sjögren’s Syndrome can occur as a primary disease or a secondory disease as a result of other autoimmune diseases. Sjögren’s is also an autoimmune disease and in my case I had secondary Sjögren’s.

Below is a great image from the Sjögren’s Syndrome Foundation depicting the symptoms of the disease.

2015_SSF_Body_Image.jpg

In terms of treatment it is treated similar to other autoimmune diseases with cortisone and immunosuppressants as there are no specific treatments for Sjögren’s Syndrome. I was already on cortisone and would later start other immunosuppressants and together with the eye drops it was manageable as I only had the dry eyes and skin to deal with. I later developed Raynaud’s phenomenon, but there is not much to do about that. Autoimmune diseases suck.

As always I was relieved to have answer, although knowing the answer didn’t really set me free. I now had three complex diseases to manage – Myasthenia Gravis being the most complex. Most importantly I had diagnosis’ and I wasn’t in the lost in the sea of no diagnosis anymore.

As I write this it is August 2017 and I can tell you that after being diagnosed a lot happened and battling these diseases, especially Myasthenia Gravis, has been complete and utter hell. Although I haven’t been diagnosed with more diseases I have had several health complications directly related to my diseases and just having autoimmune disease with a body going haywire in general. But that is another story for another day.

In concluding my diagnosis story I want to come back to the purpose of sharing it – to help others find their diagnosis and to not loose hope in the sea of no diagnosis. In hindsight it is ‘almost’ easy to see why I was sick and it feels like I could have been diagnosed earlier. I don’t know if I am right or wrong in saying that. But I do hope that someone reads this and perhaps see symptoms matching theirs that they can discuss with ther Dr. Although that being said I don’t hope for anyone to have these diseases.

Thank you for reading and sharing my story. There will be more to follow. I wish you good health and happiness.

XO

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