Systemic Scleroderma & Secondary Sjogren's Syndrome---w/Trigeminal Neuralgia (TN)

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Systemic Scleroderma..Secondary Sjogren's Syndrome

 

In my own words: 
(Age 46)-My journey into:
Scleroderma (2005) 
Sjogren’s (2006)
Trigeminal Neuralgia (TN) (2007)
... started out in darkness.
Darkness because my mind or imagination could not wrap itself around the
chaos. I stayed there for a while as I tried to soak it all in. 
I met people trying to deal with this disease as I was-“(Confused)”!
We tend to muddle through it, because not too many doctors if any at all have a grip on it either. 

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My journey to a diagnosis began Jan 2005 with Hives

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They were referred to as Chronic as they lasted more than 6 weeks. I went to my primary doctor who tried different things. When that failed to work he sent me to a Dermatologist, 
who sent me to an Allergist, who in turn referred me to a Rheumatologist. All ran tests to find the cause.
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The Allergist did the pin pricks for food & environment allergies.
All came back negative. 
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The Dermatologist took a biopsy off my
lower leg & found Leukocytoclastic Vasculitis as well as the hives.
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The Rheumatologist ran blood tests to find Scleroderma.
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The hives continued for 6 months & got big as dinner plates.
Burning, itching driving me insane.
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The hives would return every couple of years lasting from
6 months to a year.
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In this time other symptoms appeared.
Muscle pain & weakness in legs.
Acid Reflux, Chronic Fatigue, Joint pain, Raynaud's, fingers swelling, foot pain, leg pain,
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2006
Dry eyes, nose, mouth-(Sjogren's Syndrome)
I had all my top teeth pulled (2011) as it is believed the 
Sjogren's caused my teeth to deteriorate. Cracking, chipping, breaking, due to the dryness in the mouth. 
I've lost most of my bottom teeth as well.
The quality of saliva changes because of the effects of Sjogren's.                                                                 Evoxac is a medication that can help with the quantity of saliva. 
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2007 
I endured Trigeminal Neuralgia (TN)
Stabbing in upper right side of face.
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Started out one day in May as I was pumping gas in my car.
I rested my right palm on the decklid as I was pumping gas.
All of a sudden a flash of pain hit me in the face. Whoa!
I began to notice flashes of facial pain when my body would heat up. For instance after cutting the grass I got off the tractor, to feel my face flush. Just then a shot of pain to my face. Sunlight through the car window sent me for a loop.
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Later I began to notice all light & heat sources were the cause of my pain. Air conditioning & darkness became my savior. There came a time I was home-bound. Stepping outside my door caused great pain. 
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During this time I was having dental work done.
I thought the pain was dental related. I was put on an antibiotic twice thinking it was an infection in a tooth.    Then we decided to pull the tooth. The pain remained, so we thought he pulled the wrong tooth. My dentist didn't have a clue.
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Another dentist diagnosed it as (TN).
I was put on Medrol which by the way worked for the pain.
My #2 Rheumatologist told me I couldn't be on steroids due
to having Scleroderma.
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The pain was excruciating.
It is referred to as the suicide disease.
To describe it-
it felt like someone stabbing me in the face with an ice pick.
I endured it for 7 months 24/7.
Later I began to piece my triggers together.
All light & heat sources. As the months wore on the pain became
so bad I'd black out. Felt like someone pulled a gun point blank range & pulled the trigger. I remember eyes rolling back & total darkness. When I came to, my eyes hurt badly.
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Lyrica 150 mg was tried without success.
Neurontin 300 mg up to 1,800 mg were tried without success.
I contemplated MVD surgery. I was in touch with the Skull Base Institute in Los Angeles.
I saw my eye doctor & explained my torment. She put me on the path to a natural remedy.
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Dec 10 2007 my (TN) went into remission.
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I have come to terms with Scleroderma being a part of my life. It took me awhile to get where I am..Thanks in part to all the research I've done in the last 12 yrs & speaking to others with Scleroderma. Now my mission is to help others.

(cheryl)