- Transverse myelitis
- Interviews
kci160's interview
How did all start?
Symptoms came on over 5-7 days. Started with difficulty walking and brisk reflexes. Was admitted to hospital at 6 pm and was paralyzed from T6 down by 6 am
Do you already have a diagnosis? How long did it take you to get it?
Was properly dx’d with Acute Transverse Myelitis within 48 hours
For what medical specialties have you been treated? What has been the most useful specialty for your?
I’ve been seen by neurologists and a physiatrist. Other than my admitting neurologist no specialists have been of any benefit to me. I am currently being treated by an internal medicine doctor for pain management
What has been the most useful thing for you so far?
Although I am being treated for my ongoing 24/7 neuropathic pain, I am likely under medicated due to the crazy current opioid restrictions
What have been your biggest difficulties?
The non stop pain and severe hyperhidrosis with activity have me basically housebound. Fortunately these symptoms came on 30 years after my TM onset.
I did have some discomfort and intolerance to heat but nothing like I’m experiencing now. Not completely sure of the increase in symptoms other than aging I suppose
How has your social and family environment reacted? Have your social or family relationships changed?
Family is supportive and helpful
What things have you stopped doing?
Everything! I no longer socialize with friends and I used to refinish furniture as a hobby.
I worked as a nurse for > 25 years but could no longer work after this unrelenting pain started
What do you think about the future?
I think that I am going to suffer every day until I die. I had a conversation recently re physician assisted suicide and commented that they will give you enough narcotics to kill you that one time but not enough daily to manage your pain.
So far, which years have been the best years in your life? What have you done during them?
My life was good until I turned 52. I was married, had 2 kids, a great job in medical sales
What would you like to do if you didn’t have your condition?
I am now 64 so I would love to still be working as a nurse, part time, traveling, seeing friends. Just NORMAL things
If you had to describe your life in a sentence, what would it be?
Pain Pain Pain
Finally, what advice would you give to a person in a similar situation?
Find a doctor that still believes in prescribing narcotics! You probably will not get enough but it’s the only thing that works!
