Search sclero.org:
Thanks to Actelion
Patient & Caregiver Stories Main Menu
(English) Stories 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
All Stories by Date Posted: 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 ;2009
Stories by Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms
Stories by Language: French | German | Greek | Italian | Polish | Romanian | Russian | Spanish | Turkish

Krisha S: Multiple Autoimmune Condition

Multiple Sclerosis, Stiff Person Syndrome, Fibromyalgia

Medicine for Krisha by Sherrill Knaggs, ISN Artist After ten years of extreme fatigue, depression and female disorders, paratubal cysts, endometriosis, ovarian abnormalities, uterine prolapse, chronic PID and multiple herniated discs in my lumbar spine (I have congenital deformed bones and an extra lumbar vertebrae), I am frustrated.

In 1995, at the age of thirty-five, I was initially diagnosed with lupus, with an antinuclear antibody (ANA) level of 1:1280. After consulting with lupus specialist Dr. Dan Wallace in Los Angeles and complaining of numbness from the waist down and right body weakness, I was cleared of lupus and told I had chronic fatigue and to go to a neurologist to get a spinal tap.

That proved that I clearly had signs of multiple sclerosis (MS) (with protein bands of 3 ogliodendrocyte) as well as fibromyalgia. I was put on cortisone and anti-inflammatories and pain killers.

I was single and had to work forty hours a week to pay bills. I had no family support as they believed I was a hypochondriac. I lived with a roommate who ignored me, who worked for the Australian tourism business.

After five years of doctor visits, running out of insurance, and earning thirty thousand a year as temp/perm executive secretary, I married a caring man who let me quit working to work on healing myself.

My husband, Chris, was very supportive and took me to doctor appointments and helped me discover I had another autoimmune condition, Stiff Person Syndrome.

I am taking an array of medications while receiving IVIG (gamma globulin) infusions every two months. I have lost forty pounds and am bedridden. I am searching for a cure for my problem, although I realize it is all a mystery. I have severe leg and arm muscles cramps, joint pain and swelling, migraines, stiffness, trigger point pain, fatigue and have lost a life that was once active, bubbly and happy. I have some type of connective tissue disease but I am not sure which one. I have severe bladder retention, constipation, and no feeling in my feet and hands.

If somebody can guide me in a direction that makes sense, I would be grateful. I have five herniated discs in my spine and my neck grows worse every year. I have tried acupuncture, ayurvedic medicine, spiritual healing, and of course western medicine.

I have more to say but cannot write anymore, thank you.

To Contact the Author
Krisha
Email: Withheld by request
Story edited 04-06-05
Story posted 04-18-05 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
LINKS
Autoimmune Diseases
Endometriosis
Fibromyalgia
Lupus
Multiple Sclerosis
ISN Artist: Sherrill Knaggs (In Loving Memory)
Sherrill Knaggs Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.
ISN Story Editor: Judith Thompson Devlin
Judith Rose ThompsonJudith 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!
New Personal Stories
Maria T: Daughter of Deceased Scleroderma Patient (Italy) He, upon looking at my mom's face and hands diagnosed her with sclerodermia, in fact he took care of her until the end...
(Italiano) Maria T: Figlia di una Paziente Defunta di Sclerodemia (Italia) Lui, come vide a mia madre disse "tu hai la sclerodermia", guardandole le mani e la faccia...
(Update) Dee B: Limited Scleroderma/CREST Syndrome (South Africa) There is so much I want to add to my original letter after reading more of other peoples stories. I am certainly not getting better but wish I was...
Tessa: Morphea The nurse just told me that I have morphea and knew nothing about it and she told me to look online for information...
More New Stories: August-November 2009
Submit Your Patient, Caregiver or Survivor Story in:
Arabic  | Dutch  | English  | Español  | Deutsche (German)
Italiano  | Polski  | Russian  | Spanish  | Turkish  | Other Languages
We will edit your story, create original artwork to decorate it, prepare it for the web, and post it on this site. Just fill out our simple Story Submission Form for your story, updates, or email address changes.
 
Go to Krissy: Systemic Scleroderma/Stem Cell Transplant Patient
 
SCLERO.ORG is brought to you by the nonprofit International Scleroderma Network (ISN). The ISN is a full-service nonprofit scleroderma charitable foundation providing stellar research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension.
  1. Post a message in Sclero Forums!
  2. Email: isn@sclero.org
  3. English Email Form
  4. Español Email Form
  5. Italiano Email Form
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702
United States
Toll Free Hotline in U.S.
Hours: 9am-3pm CST only.
Please leave a complete message, in English.
1-800-564-7099
Direct Line
1-952-583-5735
We are also known as the Scleroderma from A to Z web site.
© Copyright 1998-2010 International Scleroderma Network
All Rights Reserved