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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 KnaggsSherrill 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

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!

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