SCLERO.ORG is retiring 4-24-2021. Thank you for the memories! You'll still find us in the Wayback Machine, and we'll carry your stories in our hearts forever.
Patient & Caregiver Stories Main Menu

(English) by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

By Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms

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
Difficult Diagnosis
Difficult Diagnosis Stories
En Coup de Sabre
En Coup de Sabre Stories
Eye Involvement
Eye Involvement Stories
Heart (Cardiac)
Heart (Cardiac) Stories
Osteoporosis Stories
Overlap Syndrome
Overlap Syndrome Stories
Parry Romberg's
Parry Romberg's Stories
Sjogren's Syndrome
Sjogren's Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Sclero Forums
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith 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!

Go to Edna S: Linear Scleroderma

SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses. We are a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team. Donations may also be mailed to:

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected]. Disclaimer. Privacy Policy.