- Transverse myelitis
- Interviews
Nancy's interview
How did all start?
Numbness in left foot that gradually progressed upward until I could barely walk without assistance
Do you already have a diagnosis? How long did it take you to get it?
Yes - Transverse Myelitis secondary to Sarcoidosis
It took about a month to get TM dx - then another 2 months after biopsy of lymph nodes to get Sarcoidosis dx
For what medical specialties have you been treated? What has been the most useful specialty for your?
Pulmonology
Neurology
Rheumatology
Ophthalmology
Cardiology
Most useful is neurology and rheumatology
What has been the most useful thing for you so far?
Hard to say - combination of steroids and now Remicade plus Physical Therapy
Also Facebook groups for TM and Sarcoidosis to understand more about these conditions and great support
What have been your biggest difficulties?
Being isolated since I walk with assistance and cannot drive yet so have to depend on family members.
Not being able to do what I used to be able to do - like shop, cook, etc
How has your social and family environment reacted? Have your social or family relationships changed?
I barely see anyone outside of my family - who have been tremendously supportive and helpful.
However I keep in touch via social media and my friends have also been supportive online.
What things have you stopped doing?
Almost everything - driving, cooking, cleaning, laundry, shopping (except online!),
What do you think about the future?
I am hopeful that I will be able to keep doing more as I continue to improve. Since I am now 70 (although I don't look it or feel like it) - I don't know but I am pushing myself to do more.
So far, which years have been the best years in your life? What have you done during them?
Hard to say, really - maybe when my children were young and growing up. Being active at my job and church.
What would you like to do if you didn’t have your condition?
Everything - be mobile again - go wherever I want whenever I want. Be able to drive to see daughter and grandchildren over 2 hours away.
If you had to describe your life in a sentence, what would it be?
I make the best of what I have but it is so limiting to not be able to do things.
Finally, what advice would you give to a person in a similar situation?
Get as much physical therapy as you can as well as occupational therapy. Keep up with your appointments and have a reliable way to take your medications and keep track of taking them. Don't be afraid to ask questions of your doctors - you may have to request things like physical therapy and remind them of tests that maybe are due. It is sometimes hard to keep track of everything but you are the only "constant" so be assertive and be sure they know of anything new from other appointments .
