Betsy with my 13 year old niece, her oldest daughter.
Now I am on a quest to learn everything there is to know about TM so we can try to get Betsy well. She’s in utter misery, and largely incapacitated and bed-bound. When she ventures out for an hour or two – like she’s going to today for a preschool event – it’s like climbing a mountain.
And she’s in unrelenting, terrible pain.
Yesterday she had her first of five Acthar shots. That’s a newer treatment that’s showing some promise in treating similar demyelinating diseases, like Multiple Sclerosis, but there are no guarantees. And the side effects she’s had since the first shot yesterday have been just awful.
There isn’t a huge amount of info out there about TM, so I am putting out the call here, hoping that my blog readers who may have been thru a TM diagnosis themselves, or who know someone who has, will share personal experiences with the disease in the comments below. Betsy has a terrific neurologist, but sometimes patient-to-patient info sharing can help provide a lot of ideas and insights for dealing with a rare diagnosis like this.
Here are the kinds of things I am hoping readers with TM will share:
How did your Transverse Myelitis start? What were/are the symptoms you experienced? How has it been treated, and what’s worked the best? Where do things stand today? What about alternative treatments and supplements? Any success with anything like that?
All insights, input and ideas will be GREATLY appreciated.