Deborah>Re: Tenacity Saying Goodbye

[Guest guest]

Hi Tenacity.

Bye Tenacity.

You will be missed.

Please, if it's not too stressful for , have him read the posts

from time to time. You never know... there may be others you can

help - via him.

I hate to see you go.

If memory serves me right... you were one of the first to welcome me

into this group.

Again, all I can say is that you will be greatly missed.

Please keep in touch via email? Please. (my perpetual email is:

rehoboth@...)

I understand, and respect your decision to bow out from here... The

dissention evidenced last week or whenever that was (memory really

shot) was stressful for me too - and I must admit that I could not

read posts for a day or two there... and I was not even " involved " .

Use your energy wisely!

Please know you are loved by many.

> Dear Friends, lurkers and dissenters,

>

> I first would like to thank those who have stood by me with all

of my

> symptoms and problems for the past year and for those whose posts

helped

> during the 2 year time prior, where I lurked when I could not

accept the

> diagnosis of MSA. I don't know what I would have done without all

of the

> unselfish outpouring of love and kindness.

>

> Since I have found out definitively that I do not have a PD+

disorder,

> thanks to the conclusive accuracy of the F-DOPA PET and the FDG PET

scans, I

> feel that I have nothing left to give this group that would be of

any

> benefit. Let me say that I would not have found the place to have

these

> scans if it had not been for Pam Bower and Al. I cannot begin to

tell you

> how this has changed my life, for the better, knowing for sure what

I don't

> have. I only wish that I had known where I could go sooner so that

so much

> suffering would not have had to take place.

>

> I also feel the need to let you know that I still have all of

the

> symptoms that I had before that led all the MDS's to Dx me with

MSA. I

> still fight the same battles as you do only now, the name of my

disorder is

> once again unknown. It is because of this and the fact that stress

makes my

> symptoms worse that I must remove myself from this group so that I

can

> properly take care of my health. The dissention that some feel

that they

> must put towards me is not helping me physically or emotionally and

for that

> matter, I cannot see how others who need understanding and support

could

> possibly benefit from it either.

>

> I don't want anyone to ever have to go through what I have and

that is

> why I have let others know that there IS a definitive test out

there to show

> not only if you do or don't have a PD+ disorder but it will

actually show

> what type you have if you do in fact have one. You do not have to

wait

> until autopsy to find out. The PET scan is cutting edge technology

which I

> am certain will one day be used as frequently as a MRI or CT scan.

I have

> found insurance companies who will pay for the PET including

Medicare in

> some states.

>

> Until we the consumer are aware of this device and its abilities

and start

> demanding that our doctors use this technology, the cost will be

beyond the

> means of most,( $2100 out of pocket can be quite prohibitive for

most), and

> proper care and treatment might be withheld because some, not all,

of our

> physicians stoic convictions that it is not needed.

>

> The dissenters on this group have their right to speech to say

what they

> feel they must as do I. I, the patient who remains ill and fights

for each

> day, cannot keep up with the stress that this causes me and the

negative

> effect it has on me. People once thought the earth was flat too.

I guess

> that after countless, needless suffering goes on from others and

the

> technology is more readily available, that this debate will

continue but at

> a price. There will come the day that you will look back and see

the

> message that I tried to convey. I hope others will not wait until

this time

> to look back and have regrets.

>

> It is only out of compassion and love that I have tried to

educate you

> that this technology exists NOW and that there is another option

other than

> autopsy. It is up to each of you to see what is in your heart and

decide

> whether this is something that you want to pursue or not. I pray

that

> others will and whether or not it turns out that they do indeed

have a PD+

> disorder, I pray that the results will lead to them being treated

correctly.

> Let me say something else, I DO NOT advocate that anyone stop

taking the

> medications that their doctors have prescribed for them. I don't

know how

> this assumption ever got started but let's put that to rest too.

>

> For those who trust their doctors, know that I trusted mine

too! I

> trusted that I did have PD and then I trusted that I did have MSA

then I

> trusted that the DBS would work for my rigidity and Bradykinesia

and I

> trusted that I didn't need the PET scans because I trusted their

clinical

> observation and time progression analysis of my disorder. ALL WERE

WRONG!

> I don't live in a bubble and I know that I am not the only one who

is having

> this happen to them.

>

> Enough said, you know what was in my heart and you know that I

was only

> trying to help others as others have tried to help me. Understand

that I

> care very much for all of you but I lack the physical fortitude to

defend

> every word that I utter. My health is more important and anything

that is

> destructive to that must stop. So with that, I say good-bye and I

wish you

> the best in your daily battle to overcome such horrible diseases.

>

> Sincerely,

> Deborah aka Tenacity

> But for the grace of God, Go I!

>

>

>

>

>

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