Re: Sort of broke down today

April 11, 2000

,

Sorry about your condition.

You are reacting very normally to some very daunting news.

There are many on this list who have been very ill much or all of our lives.

You are not going through any more than what many have gone through. Many

of us have gone years without even a good diagnosis of anything besides

malingering.

We will be glad to help all we can.

Sort of broke down today

>Hi Everyone,

>

>Wanted to know if anyone else has had problems adjusting to the

>prospect of the enormously long road ahead after being diagnosed. I

>thought I was doing well. I was diagnosed a few weeks ago and was glad

>to find out. Haven't found a nsg yet. Kind of came out of nowhere

>today and I just kind of lost it. I cried for about 3 hours. I kept

>telling myself to stop but I just couldn't. I guess I was just having

>an involuntary pity party. I am so tired of being sick and tired and

>just started thinking I just don't really care. Today I just almost

>can't stand the thought of the process I am going to have to go through

>to get treatment for this. Finding someone who won't hack me up,

>someone who has good success rates, and keeping my sanity in the

>meantime. I just kept thinking I can't do this. I am so close but

>already so wrung out. Anyway, thanks for listening. I'm sure I'll be

>better tomorrow. I am not the type to wallow but today I might as well

>have been a pig.

>

>_________

>NOTE: NCC refers to posts with No Chiari Content

>Unsubscribe Yourself: chiari-unsubscribeegroups

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>

April 11, 2000

Hi ,

I know how you feel. I too was recently diagnosed and I will be seeing

Dr. Frim on Thursday. I have been get really frustrated myself here lately.

Not being able to do the things I used to do with such ease is seriously

irritating. Plus, I keep thinking that I am too young for all of this. One

of the few things that keeps me going is knowing that I have a wonderful

support group family here. I can come to them any hour of the night or day

and vent without having someone say, " Oh you are just having psychosamatic

symptoms " , or a host of other things I have heard lately. Trust in a higher

power, trust in WACMA, trust in whatever gets you through the day. And as a

Dylan wrote: Do not go gentle into that sweet night. (I know it was

something like that)

Hugs,

Ann Marie

ACM 15 mm

April 12, 2000

....

Totally agree. We have to be our own advocate. We have to find ways that

are not always traditional to get what we want. Some of the best hospitals

in Boston missed this.

It just happened that I was seeing a Nurse Practitioner who was highly

recommended to me. She met Dr. Flechas (who screens patients for Dr. Rosner)

at a medical conference in NC and felt I should get down there to see him. I

live in Massachusetts. So, I did - just 2 weeks ago. Had an MRI and brain

scan.

When she first mentioned this protocol to me, I never really thought it was

something I would ever consider. Can't believe I've come this far.

Noreen

April 12, 2000

....

Totally agree. We have to be our own advocate. We have to find ways that

are not always traditional to get what we want. Some of the best hospitals

in Boston missed this.

It just happened that I was seeing a Nurse Practitioner who was highly

recommended to me. She met Dr. Flechas (who screens patients for Dr. Rosner)

at a medical conference in NC and felt I should get down there to see him. I

live in Massachusetts. So, I did - just 2 weeks ago. Had an MRI and brain

scan.

When she first mentioned this protocol to me, I never really thought it was

something I would ever consider. Can't believe I've come this far.

Noreen

April 12, 2000

....

Totally agree. We have to be our own advocate. We have to find ways that

are not always traditional to get what we want. Some of the best hospitals

in Boston missed this.

It just happened that I was seeing a Nurse Practitioner who was highly

recommended to me. She met Dr. Flechas (who screens patients for Dr. Rosner)

at a medical conference in NC and felt I should get down there to see him. I

live in Massachusetts. So, I did - just 2 weeks ago. Had an MRI and brain

scan.

When she first mentioned this protocol to me, I never really thought it was

something I would ever consider. Can't believe I've come this far.

Noreen

April 12, 2000

Carolyn,

It is all a matter of finding someone who will listen. Don't waste your

time trying to convince any doctor to change their mind. Most have too big

of egos to let a patient educate them. Put your effort into finding ones

that will be open to your situation and dump the rest. They are their to

serve you and not the other way around. Fire the ones that are not helping.

I have spent a lot of time in doctors offices on many different conditions,

but I have not yet made much of an effort of find ones that will evaluate my

possible ACM. I am not even going to my PCP with this unless I have a

Neurosurgeon in mind. I am considering writing a letter to all the

Neurosurgeons in my area, asking them if they have experience in adult ACM

and if they would be interested in evaluating my case. If they are

interested, then I would ask them to have their staff call me. If I don't

get any calls, then I know that no one in this area is really interested in

seeing me. I have just saved myself a lot of time and money.

In that case, then will I just work on finding a PCP that will schedule the

MRIs so I can get the films to send back to Rosner, Frim or other such

doctors who are already going the work. Then at least I will know for sure

what I am dealing with.

Remember, It is not your duty to change the Medical profession. It is your

duty to get well, so you will have to find a way to get what medical help

you need. Don't sweat the close minded Idiots.

Sort of broke down today

>>

>> >Hi Everyone,

>> >

>> >Wanted to know if anyone else has had problems adjusting to the

>> >prospect of the enormously long road ahead after being diagnosed. I

>> >thought I was doing well. I was diagnosed a few weeks ago and was glad

>> >to find out. Haven't found a nsg yet. Kind of came out of nowhere

>> >today and I just kind of lost it. I cried for about 3 hours. I kept

>> >telling myself to stop but I just couldn't. I guess I was just having

>> >an involuntary pity party. I am so tired of being sick and tired and

>> >just started thinking I just don't really care. Today I just almost

>> >can't stand the thought of the process I am going to have to go through

>> >to get treatment for this. Finding someone who won't hack me up,

>> >someone who has good success rates, and keeping my sanity in the

>> >meantime. I just kept thinking I can't do this. I am so close but

>> >already so wrung out. Anyway, thanks for listening. I'm sure I'll be

>> >better tomorrow. I am not the type to wallow but today I might as well

>> >have been a pig.

>> >

>> >_________

>> >NOTE: NCC refers to posts with No Chiari Content

>> >Unsubscribe Yourself: chiari-unsubscribeegroups

>> >Technical Help: chiari-owneregroups

>> >WACMA Home: www.pressenter.com/~wacma

>> >WACMA List: www.eGroups.com/group/chiari

>> >

>>

>>_________

>>NOTE: NCC refers to posts with No Chiari Content

>>Unsubscribe Yourself: chiari-unsubscribeegroups

>>Technical Help: chiari-owneregroups

>>WACMA Home: www.pressenter.com/~wacma

>>WACMA List: www.eGroups.com/group/chiari

>>

>

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April 12, 2000