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

Buggzy: Autoimmune Hepatitis, Fibromyalgia, Undiagnosed

I have long ago given up trying to find what is wrong with me.

Swallowtail Butterflies by Ione Bridgman, ISN Artist I am a forty-six-year-old mother of three children, and I have two grandchildren. This might seem like a tirade, but I am anxious to know if anyone has had a similar experience. I have been diagnosed with fibromyalgia, ulcerative esophagitis, Gilbert's syndrome, diverticulitis, peripheral neuritis, and trigeminal neuralgia. I lost all taste sensation for about eight months, at one stage, but all that showed up in pathology was an elevated erythrocyte sedimentation rate (ESR).

When I was ten, I got this huge, black blood blister on the roof of my mouth, which stayed for years. I had it x-rayed and they put it down as a mucous cyst, stating that it was highly unusual! Over the years, I have had blood blisters, the size of grapes, in my mouth. The doctors are mystified by it! I have also had blood blisters on my thighs, stomach, and chest as well as petechiae.

I have had surgeries for dislocated joints, a hernia, and removal of my gallbladder and tonsils. I have also had a nephrectomy because of kidney cancer, and sutures to hold my pregnancies. I lost my first two babies preterm and all my kids were premature.

My antinuclear antibodies (ANA) ranged between 1:40 to 1:640, and I have always had abnormal liver function tests as well as elevated serum ACE and ESR levels.

The only reason I have listed everything is in the hope that one of you may have had similar experiences. I know it sounds like a hypochondriac's diary, but I am really desperate to get some answers or to hear from others in the same boat as me.

~ Update ~

Since my first letter in 1999, I have had many unnamed illnesses. I am just getting over my third attack of trigeminal neuralgia. It is the most excruciating thing I have had to deal with. It lasted over a month this time and gradually subsided. My blood screens for this period were way off the chart. They showed extreme inflammation in my body. The doctor did not tell me the levels, but I had to go back for repeat tests.My hair was falling out by the truckload. I don't have any bald patches, just overall hair loss.

In May 2001, I developed three blisters the size of hardboiled eggs on my stomach. I foolishly burst them and copious amounts of fluid came out. The lesion had three points of hemorrhage on the surface, and it deteriorated into a severe ulcer. I had skin biopsies. Nobody offered a diagnosis. Nobody had any idea. Nobody had seen anything like it. Possibilities thrown at me included a burn and a white-tailed spider bite. The biopsies simply showed ulceration. Eleven weeks later with fresh dressings every second day, none of us is wiser, except that I have a huge, ugly scar.

At the same time this was happening, my left knee started dislocating again for no reason, and my problems with endometriosis began. I felt bamboozled by all these things. My serum iron levels were very low, but the doctor suggested that this could have been from the loss of all the fluid through the ulcer on my stomach.

My fibromyalgia has been really bad over the last twelve months, and I find I have to sleep often. The trigeminal neuralgia caused my blood tests to be extremely abnormal. Over the last two years, I have had two hysteroscopies for endometritis (not endometriosis). It seems that instead of being 2 cm., my endometrium is 14 cm.; all due to inflammation. My gynecologist just wants to wait and see if it sorts itself out.

Of interest is that they have found I have an abnormal Alpha-1 Antitrypsin (A1A) gene, supposedly passed down through my Danish heritage.

Since my last update, I have also had another liver biopsy, which showed inflammation, but no scarring. I have long ago given up trying to find what is wrong with me.

To Contact the Author

New email address needed.
Old Email Prefix: maurbug
Story posted 7-7-99
Story update 2-22-02
Story edited VH1: JTD 9-8-03
Email note posted 01-20-05 SLE

Story Artist: Ione Bridgman
Story Editor V1: Judith Devlin
Antinuclear Antibodies
Bullous Pemphigoid
Cancer and Scleroderma
Gilbert's Syndrome
Hair Loss (Alopecia)
Peripheral Neuritis
Pregnancy and Scleroderma
Trigeminal Neuralgia
Ulcerative Esophagitis
Voices of Scleroderma Volume 1

This Story is Featured in Voices of Scleroderma Volume 1

Voices of Scleroderma Volume 1 The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!

ISN Artist: Ione Bridgman

Ione BridgmanISN Artist Ione Bridgman created original artwork to illustrate this page. She is 90 years old, and lives in New Zealand. Her lovely paintings illustrate many of our pages and the covers of our Voices of Scleroderma Book Series .

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 Bwana: Keloids
Most Recent Donors

Winn Schillberg
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!

In Loving Memory

Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.


SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to:

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA

Email [email protected] to request our Welcome email, or to report bad links or to update this page content.

TOLL FREE HOTLINE 800-564-7099
Free to U.S. and Canadian Callers. Ask for our Free Info Packet by mail or email!
Scleroderma, Pulmonary Arterial Hypertension, and related illnesses.
Privacy Policy.

The most important thing in the world to know about scleroderma is!
Donate Now
Copyright 1998-2016, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.