- Whipple's disease
- Interviews
Charles's interview
How did all start?
Aches and arthritis in major joints. Bilateral symmetry.
Rheumatoid Arthritis diagnosis, but serum negative.
Did not strongly confirm to typical RA symptoms. Hands minimally affected.
Treated for 3 years with RA drugs, and never responded.
Do you already have a diagnosis? How long did it take you to get it?
Yes. It took three years and a trip to Mayo Clinic, where they attributed the symptoms to Whipple's disease and tested for it. PCR tests confirmed.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Infections Diseases. Only way to go, though even few of them deal with Whipple's.
What has been the most useful thing for you so far?
Mayo Clinic
What have been your biggest difficulties?
Getting a proper diagnosis. Whipple's is so unusual, and can mask as many different problems.
Rheumatoid Arthritis, Cardiac issues, exhaustion. Typically considered a digestive disorder. That is most common manifestation, and doctors lose sight of the fact that it can impact many areas.
How has your social and family environment reacted? Have your social or family relationships changed?
No
What things have you stopped doing?
I stopped using the wheelchair that I was in, once I got treated.
What do you think about the future?
Looking better.
If you had to describe your life in a sentence, what would it be?
Do not give up.
Finally, what advice would you give to a person in a similar situation?
If you don't have a conclusive diagnosis, keep looking. Mayo Clinic, or other comprehensive research hospital.
