- Transverse myelitis
- Interviews
Nailsjule's interview
How did all start?
It felt like someone punched me in the back around T-6 Vertebrae. then I started to feel nauseous, and within 1/2 hour my right leg started to get tingly and numb. within 5 hours I was paralyzed from just below my breast down.
Do you already have a diagnosis? How long did it take you to get it?
Yes, I was diagnosed within 5 days after my onset started, I was very lucky one of my Neurological team happens to have a brother that had Transverse Myelitis.
For what medical specialties have you been treated? What has been the most useful specialty for your?
physical therapy
What has been the most useful thing for you so far?
physical therapy
What have been your biggest difficulties?
Emotional dealing with being very active to not being able due to the same thing I used to!
How has your social and family environment reacted? Have your social or family relationships changed?
I have a very supportive family and friends, they helped me with everything that changed, The Transverse Myelitis Association know Siegal Rare Neurological Association (SRNA) help with getting me in contact with new friends that have my condition who understand what is going on with your body.
What things have you stopped doing?
Running, squatting, and sitting on my knees. I am a nail technician and I had to give up giving pedicures it was very hard to sit the way I had to, to give the pedicures this was 1/2 of my business.
What do you think about the future?
Well, I hope that I will feel better with time. I would like to get off some of the pain medications, Lyrica, Cymbalta, Extampza, and Hydrocodone.
So far, which years have been the best years in your life? What have you done during them?
Probably in my 20's I was very busy and active in all aspects of my life.
What would you like to do if you didn’t have your condition?
I would like to be able to do things like clean my house in one day! something that used to take me 2-3 hours. I would like to work again full time and be able to do pedicures.
If you had to describe your life in a sentence, what would it be?
I feel I am very lucky to have a great support system, very lucky to be able to communicate with people that have my condition and try to help them feel better about themselves.
Finally, what advice would you give to a person in a similar situation?
I would tell them to be their own advocate if possible. There are not enough doctors out there that know about the condition so it is best to contact an association like the SRNA Siegal Rare Neurological Association. People that can help you understand what is going on. The accuses to the Doctors doing the research. Physical therapy, Vitamin D.
