Feel like giving up

December 15, 2007

Hi everyone,

Its been a long time since i have been on line and I hope everyone has

improved in my absence.For myself i am just about at the end of my

wits.My pain manangement guy who I have been seeing for the last ten

years has retired.He sent me to a new nr who scoffed at the idea of

doing surgery.He told me how fit and healthy looking I was.I have a

lot of muscle buildup in my upper arms and also my calves.Couldnt get

through to him about how the pain weakness has now got worse in the

arms,hands and shoulders.Went into hospital in Oct and typical felt

the best I had in 2 years.Who wouldn't with basically bedrest and

being fed 3 meals a day for 2 weeks.

They had a muscle spec see me and he thought i had a thing called

thompsens disease as well.they did nerve tests and they came back as

having bad carpal tunnel in both hands.The muscle guy wasn't convinced

and said he thought there was more going on and to leave it with

him.He doesnt agree with surgery on the tc either even though its to

L3 and i have the fatty filum and other stuff.funny their guys report

was different to the one i had from a spec neuroradiologist.

The last 6 weeks i have had terrible sciatic type pain and if i sit

for any lenghth of time my legs are stiff for hours after.The back

pain is terrible.Does anyone have hand and arm stuff happening??I am

really desperate.The drs over here just aren't interested.I have a cd

on my latest mri scans.Would dr Bolognese look at them do you think??I

am willing to pay a consult fee.I just feel like i can't do this

anymore.My whole body feels like it is cracking up.Ten years of this

is taking its toll though i would give anything t even feel like i did

5 years ago.Sorry for such a depressing letter at this time of year.

Anyway hope everyones pain levels are low at Xmas and lets hope the

new year brings about some good changes for everyone

Take care all of You

in australia

December 15, 2007

, it's hard to not want to give up when you have

pain all the time. And when your docs don't listen to

you, it's even worse. Every time I saw a doctor who

said " Well you look good " , I felt like maybe I was

just crazy and none of the other stuff is real. Now I

know better. It's real.

Different types of doctors look for different things

on the films they get. I think that's why a

neurologist will see mostly nerve related issues and

an orthopedist sees bone stuff. It's just the nature

of the beast. There are so many different things to

look at, and humans naturally see the familiar. Both

reports are probably right (unless they flat out

contradict one another - and then it's time for

another opinion!).

I have upper body stuff going on now that is trumping

all my lower body stuff by a mile. Weakness in my

hands, burning in my neck and shoulders. It's

horrible to have new pain. Like the old pain wasn't

enough?

Like I said, it's hard not to get discouraged, but in

the end, what does getting discouraged really do for

you? Not a lot. So not only are you in pain, but

you're also emotionally buggered. I can't really do

much to stop from hurting except take my meds and try

to take care of myself. I can control my emotions and

refuse to give into the temptation to just pack it in

and stay in bed forever. Some days it's a lot harder

than others. Especially when you get up and are stiff

and sore and achy. It sucks, but it's what you do,

because the alternative sucks worse.

Yeah, I'm sure that was a big help, wasn't it? I'm

sorry you're having so much trouble. My advice is to

find another pain doc (mine left town a few years ago,

I have yet to find one I like). If his replacement

isn't a good fit for you, see if you can find a

different one. It seems to me a pain doctor should be

aware of hidden disabilities and hidden pain

syndromes. This guy sounds like a doofus.

Big hugs and take care!

--- wrote:

> Hi everyone,

>

> Its been a long time since i have been on line and I

> hope everyone has

> improved in my absence.For myself i am just about at

> the end of my

> wits.My pain manangement guy who I have been seeing

> for the last ten

> years has retired.He sent me to a new nr who scoffed

> at the idea of

> doing surgery.He told me how fit and healthy looking

> I was.I have a

> lot of muscle buildup in my upper arms and also my

> calves.Couldnt get

> through to him about how the pain weakness has now

> got worse in the

> arms,hands and shoulders.Went into hospital in Oct

> and typical felt

> the best I had in 2 years.Who wouldn't with

> basically bedrest and

> being fed 3 meals a day for 2 weeks.

>

> They had a muscle spec see me and he thought i had a

> thing called

> thompsens disease as well.they did nerve tests and

> they came back as

> having bad carpal tunnel in both hands.The muscle

> guy wasn't convinced

> and said he thought there was more going on and to

> leave it with

> him.He doesnt agree with surgery on the tc either

> even though its to

> L3 and i have the fatty filum and other stuff.funny

> their guys report

> was different to the one i had from a spec

> neuroradiologist.

>

> The last 6 weeks i have had terrible sciatic type

> pain and if i sit

> for any lenghth of time my legs are stiff for hours

> after.The back

> pain is terrible.Does anyone have hand and arm stuff

> happening??I am

> really desperate.The drs over here just aren't

> interested.I have a cd

> on my latest mri scans.Would dr Bolognese look at

> them do you think??I

> am willing to pay a consult fee.I just feel like i

> can't do this

> anymore.My whole body feels like it is cracking

> up.Ten years of this

> is taking its toll though i would give anything t

> even feel like i did

> 5 years ago.Sorry for such a depressing letter at

> this time of year.

>

> Anyway hope everyones pain levels are low at Xmas

> and lets hope the

> new year brings about some good changes for everyone

>

> Take care all of You

>

> in australia

>

Check out my blog: http://princessmatildalovestostamp.blogspot.com

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December 16, 2007

-

I hope by the time you read this you are feeling a bit better. I'm sure you

are much more of a pro with this TC stuff than me, but just the same, I thought

I'd mention something. Have you had any urodynamic tests done to indicate

bladder spasms/neurogenic bladder? I was surprised to find that the only reason

my son's neurosurgeon agreed to do the de-tethering surgery (he has the fatty

filum) was because he had bad bladder spasms and the urologist convinced him

that the surgery could really help this. Just another angle I thought you might

try. I also had Tom Moriarty out of Kentucky and McClone in Chicago read his

MRI films who both agreed surgery was a good option but I never had to bring it

up to my NS because of the bladder spasms. My son had loads of other symptoms

too but is severely multiply disabled and the docs always blame his stuff on one

of his other problems. Don't really know if the surgery helped or not because

he has also been having trouble with his

hydrocephalus, but it seems to me like his bladder spasms are better. Guess

I'll find out when he is retested. We can hope. Hard not to get all preachy on

you but this body of ours is temporary and we are all here a specific length of

time for a purpose, and this earth is not our final destination. Your adult

perspective is very helpful on this website for parents of children like mine

who cannot tell us what they are feeling. Blessings to you! Keep on keeping

on!

Debbie & Ben 4 yrs. (Down Syndrome, Hydrocephalus, Hirschsprung's Disease,

fatty filum de-tethering, bladder spasms, recent ileostomy, cerebral palsy,

legally blind)

" Trust in the Lord with all your heart, and lean not on your own

understanding. " -Proverbs 3:5

wrote: