Writing about the TSC experience

[Guest guest]

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Hi, it is Caroline son. So some of you are tackling the project of

writing a book about TSC-----I participated in such a project when I was

living under the diagnosis of MS. It was published as THE MS AUTOBIOGRAPHY

BOOK, along with the contributions of numerous folks with MS. Then when I

was 50, I discovered that I did not have MS at all, and finally was operated

on, and started making improvements.

I frequently wonder about the fact that I haven't done any writing since I

finally got the correct Dx, but my life has been full of challenges and I

haven't had the leisure to do it------Also, I have a basic problem

believing my own story, which makes it almost impossible to write for

others----->

>

> Hi to all,

>

> It's been months (many of them) since I posted anything here. I've

> tried to keep up with the list, even tho I've been very, very quiet.

>

> When last I tuned in, I was asking if anyone had ever had an EMG/NCV

> test and what were the results. I had a neurologist telling me that I

> had Charcot-Marie-Tooth disease (a form of muscular dystrophy) after

> finding nerves with axonal and demylinating damage in my formerly good

> leg. Unfortunately, second neurologist told me the same thing, which

> was upsetting. You may remember that my neurosurgeon discharged me with

> the words that he didn't not want to see me until I could not walk at

> all, so that option for investigation wasn't open.

>

> Then I started developing more/new hip and thoracic pain - and was told

> (and I quote) for someone my age my back is a real mess, but for

> someone with spina bifida my age it's not that bad. This doctor liked

> the new diagnosis of degenerative spinal disease. I did do several

> round of physical therapy with some success after I found the right

> therapist.

>

> Just before this I'd been talking to who is writing the book

> about people with SB over the age of 40, (she'd asked me to edit it and

> we've been working on this project for about a year) and we put a

> proposal in to present at the national spina bifida conference, which

> is at the end of this month in Minneapolis.

>

> Our proposal was accepted and we will be presenting two sessions at the

> conference. My parts will be on aging with SB, tethered cord, and

> depresson.

>

> But the exciting part is that 's doctor's at Mayo Clinic are

> intersted in seeing me, and I have an appointment with her PM & R doctor

> next Tuesday! I now have the freedom to do this, as I'm now on Medicare

> via disability. Perhaps I'll get an answer to whether all my latest

> problems are related to TC or all these new diagnosis, or simply aging

> with a disabilty. I leave for Minnesota Friday.

>

> V

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> Not Medical Advice. We Are Not Doctors.

> Need help with the list? Email

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