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

Swede: UCTD or Hypochondria

The way I see it, rheumatologists did not want to do anything
based on the difficulty I was having, but rather they made judgements based on my lab results.

Barometer by Sherrill Knaggs, ISN Artist I have been experiencing severe pain in my feet and ankles for the last two years. At first it was a stiffness in the morning and then it progressed to a constant feeling of inflammation and soreness in both feet and ankles. On top of that, I was falling asleep at work. I was just dead tired. I would go home and hit the old sack. I knew I had a problem.

I saw my family doctor about it and he treated me for plantar fasciitis. I put a gel pad in my shoe, but it did not help at all. I finally talked my doctor into referring me to a podiatrist. After telling me that there was nothing wrong with the x-rays of my feet except a 'little arthritis', he diagnosed Morton's Neuroma in both my feet. He told me I should have foot surgery. That was the last time I saw a podiatrist.

About a year ago, my wrists and hands started to get sore for no reason. I could not flex my wrists without pain. Then, while driving to or from work, my thumb and first two fingers would start to tingle and go numb.

When I told my physician about this he ordered bloodwork including ANA and ESR. He also sent me to a specialist for an electromyogram (EMG). It turns out I have carpal tunnel syndrome in both wrists, but it is severe in my left wrist, which does not make sense to me because I am right handed. The bloodwork came back with a positive ANA, high titre (<640) speckled pattern. The ESR test is okay, with no rheumatoid factor. The doctor prescribed a nonsteroidal anti-inflammatory drug.

I went to my first rheumatologist who noticed the discoloration on the outside of my eyelids that ran down my cheeks. I also have purpura covering my lower legs. He also did another ANA, ESR plus other antibody testing. The ANA came back positive again, but everything else was normal. He diagnosed undifferentiated connective tissue disease (UCTD), with a strong possibilty of differentiating into dermatomyositis. He said to come back if I had more symptoms.

Since that really did not tell me anything and the only medicine he put me on was to help me sleep better at night, I decided I had better see another rheumatologist. At this point the pain was going up my leg, my whole calf hurt, and it was eating into both hamstrings.

Four months ago I started to see my current rheumatologist. She says she will 'investigate further' into the positive ANA, but she has not done so yet. My legs are still hurting and inflamed. My bloodwork is now showing possible liver problems. The rheumatologist says I should exercise and lose weight, and that I have 'wear and tear' osteoarthritis.

Two weeks ago I went to a major teaching hospital's rheumatology department and it was the same old runaround. After waiting five months for an appointment, I was told that I had varicose veins that are deep and that my foot does not have a good arch. So I was referred to the vascular department and to Orthopedics for a shoe insert. They also drew blood. They were going to get back to me the day after my appointment to confirm the referrals they made, but I haven't heard anything from them and I do not feel like wasting more time on them.

The way I see it, rheumatologists did not want to do anything based on the difficulty I was having, but rather they made judgements based on my lab results. When and if I have more symptoms I am sure they will welcome me into their office, but until I fit into a definite sanctioned illness I am wasting their time with my complaints.

To Contact the Author
Swede
Email: Address withheld by request

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
LINKS
ANA
Carpal Tunnel Syndrome
Dermatomyositi
Difficult Diagnosis
UCTD
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 Syl: SD/CREST/PH/Sjögren's
 
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