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Edith: MCTD, En Coup de Sabre/Parry Romberg's, Lichen Sclerosus, RA, Sjogren's

I always felt very tired and put it down to the fact that I was a mother of three small children, although deep down I knew it wasn't normal tiredness.

Teapot and Tea Cups by Shelley EnszHi. In about 1990 at age thirty-seven I became asthmatic. For years prior I had suffered rhinitis. I always felt very tired and put it down to the fact that I was a mother of three small children, although deep down I knew it wasn't normal tiredness. I attended the doctor with a lot of complaining about struggling to walk sometimes.

In 1994, I developed foot drop after a transient ischemic attack (TIA). (I have had many TIAs since.) I was taken in to the Neurological section of The Southern General where they ran a series of tests, and the neurologist diagnosed nerve damage. The foot drop gradually got better although I still have a general weakness down my right side.

It was about 1997 when my husband, Jim, told me that I had a bruise on my back where my bra clasped. I suffered greatly with intermittent joint pain, severe headaches and stabbing pains in my left eye. I spoke to my general practitioner (GP) about everything so he took some blood work and the next week he told me that I had tested positive for rheumatoid arthritis and that I wasn't to worry about the mark on my back. I am allergic to all anti-inflammatories so I just had to suffer and get on with life.

By 1999 I noticed two strange lines going from my eyebrow on the right side of my forehead and in the middle of the lines my skin became light and waxy. This time I was referred to a dermatologist and he diagnosed scleroderma. I had no clue what that was. The dermatologist handed me a bunch of leaflets and told me to read them when I got home. I could not believe what I was reading. I was petrified! I got on the internet and found out as much as I could.

On my return to my GP, I felt I knew more than him. I had to beg for a referral to the rheumatolgist. He was very good and took his time checking me over and confirmed that I had rheumatoid arthritis, scleroderma, a heart murmur and lichen sclerosus, but because of my allergies he could not medicate me. Life went on.

In 2002, I noticed that my neck was very swollen and my breathing problems were getting worse. I was sent back to hospital this time I was told I had a huge multi-nodular goiter that was removed.

In January 2007, I was admitted to hospital three times suffering from meningitis. On the first admission I also had orbital cellulitis. I was told scleroderma was causing the meningitis. I have had several bouts of uveitis as well.

One evening in 2008, I had just finished eating dinner when I felt rather strange, hot and sick. I had a full blown clonic tonic seizure that was horrible. I still have regular seizures.

In January 2009, I was admitted again with meningitis. The neurologist diagnosed En Coup De Sabre and Parry Romberg Syndrome and he told me this is the cause of the seizures. I asked him to do an MRI but he said no and sent me home to get on with life.

I saw the rheumatologist again in 2009 and he told me that I also have Sjogren's Syndrome, osteoporosis and degenerative back problems which causes severe lower back pain. He told me he could do no more for me as in his opinion all I need is palliative care. A lot of other health issues are involved but I feel I have said enough.

I would like to thank you for the effort you have all put into creating this site and others like it. I get very little support from the NHS doctors in my area. My GP is fabulous, but at the end of the day it is not enough. I would be lost without people like you.

To Contact the Author

Email: Withheld by request
Story edited 02-16-09 JTD
Story posted 03-13-09 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
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ISN Story Editor: Judith Thompson Devlin

Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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