Re: Introduction and overcoming regrets

[Guest guest]

HI there

Sorry you have to be here but it is good you found this group that is

very knowledgeable and helpful.

It is unfortunate that you and so many have had to suffer so long

without a diagnosis. I think a lot of us ask these questions and rack

our brains trying to find an answer.

On the other hand...This is an area of medicine that is still very

underdeveloped and where the knowledge comes from expensive (MRIs)

and invasive procedures (surgery), that have only more recently

become more available for people with cases that are not as obvious

on routine studies. What I mean is, tethered cord has been treated

for a long time on patients with open spina bifida for example but

those of us with forms that are less visible(tight fillum, occult

tcs) have only more recently been able to have the option of

treatment...So it takes a lot longer to develop the data than a new

medication lets say would take to come to the market.

It could always be worse...you could have had problems before MRIs

ever came out. It could also be better...you could have had more

compassionate support in the 13 years. Sometimes when we're sick for

a long time people and we just forget what we used to be like and

give up on us?

I try to rationalize some of this thinking that Penicillin came out

in 1940s. Everyone laughed at Flemming about it. It took a long time

for the community of doctors and patients to realize what a miracle

Penicillin was. We can't blame doctors for the people that died in

the 1930s from infections b/c they didn't have antibiotics.

If it's any consolation, I had manageable problems for 35 years, more

severe ones for 1 year prior to diagnosis. Most my family thought I

was crazy. Fortunately some of the people that know me well were very

certain something was really wrong b/c they knew how I never stayed

still for a minute before all this and all of a sudden I could barely

get across the kitchen.

There is no easy way here.

For most people tcs doesn't cause seizures though, what did your MRI

show? I'm assuming they've scanned brain and whole spine?

In a wierd twist of fate, my son has ACM/TCS and I was able to

advocate for him and get him all the treatment he needed. MAybe that

is the one silver lining to my story. If I had never had it, my son

would be in a lot worse shape by now.

After seeing more than 10 doctors and sending my MRIs all over the

country and finally coming up with a diagnosis, I actually found a

few of my doctors that I wrote back to very calmly and explained what

had happened in hopes that the next person that came along could

benefit from it.

I wish somehow we can at least help the people that have these

problems after us and pass it on. In a way by helping someone else,

it seems easier to accept what we have to deal with.

Best wishes to all of you out there that have these questions!

AG

>

> Hello,

>

> I'm here because its recently been discovered that my neurological

symptoms (speech and walking difficulty and convulsions) are

triggered by pulling up on my skull and pushing on the side of my

neck and lower back. . . .