Re: Advice Needed, for both Deborah and .

[Guest guest]

Dear Deborah and ,

I do not read all the messages, since I do understand english, but reading

every message in a language that isn't your native is exhausting.

I've seen the message " Advice needed " coming up on the list very often and I

only read the last message from . That made me also wanting to know

Deborah's message. So, I know now the first and the last message. All

messages between I'm not going to read, so I might say things that are

already said.

Deborah:

I know how you feel. Anne came the same long road. Had all kinds of doctors,

orthomolucularists, magnetisers, aromatherapists, acupunturists,

electroacupuncturists and reiki masters. And all, except for the

esthablished doctors she is seeing now, claimed to cure her.

She visited almost every page on the internet about this subject and has

made searches to every complaint she had. Since the complaints are so

difficult, she thought she had every disease she found on the internet. Went

to her doctor and was told that she cannot have that curable disease because

so and so.

Then comes the point that her regular doctor doesn't know anymore and she

got moved on to the next one. And the new one does not believe the tests

already done, no, all tests must be done again.

Finally, after 9 years after the onset of her symptoms, she is diagnosed

with PAF. How long she still got? I don't know. I only see what she can do

and what she cannot do anymore over the years. She has accepted that there

is no cure and I have accepted there is no cure. We both try to make the

best of the remaining time.

:

No doubt you love your wife and hate seeing her to suffer. I have not read

what her complaints are, but since both of you are here, I assume that she

got the same symptoms as most of us got. I would too travel all over the

world if someone had a cure, but should there be someone, he would be

spotted immidiately by this group. Therefor, , you must accept the

illness of Deborah and enjoy every minute you can be with her. It has no use

dragging her from one doctor to the other and only hearing the same answers

you already got. Every test and tryout doesn't make her feel better. She is

waisting the good days you could joy together.

Deborah and , start today with the rest of your life.

I'll keep you in my prayers.

Timo

> Well my mail box says that I have 180 messages to catch up on. Before I

go

> and read all that has been happening to you guys and gals, I wanted to let

> you know of my past week with doctors and disease. LOL.

>

> The results from my Glucose PET scan came in. The neuro-radiologist was

not

> " qualified " to read it. He has been trained in Alzheimer's, seizure

> disorders and tumors. His report stated that the source of my seizures

> could not be located. HA! I haven't had a seizure since January 26th.

> did some calling all across the country and we have an apt. with

yet

> another movement disorder specialist in ton, S.C. (about a 5 hour

> drive for us) on August 19th. talked to the radiology dept. and

they

> CAN read a glucose PET to determine the extent of the MSA. More waiting.

>

> Yesterday, I saw a neuro-ophthalmologist. He said that my eyes are

" normal "

> but the degeneration of my brain stem is causing my eyes to be misaligned.

> That is why I have trouble focusing on things and have intermittent double

> vision. He has written a prescription for glasses with prisms. He thinks

> that this should help for about 6 months. He said that people with brain

> stem problems usually have to have stronger prisms about that often. No

> glaucoma, no cataracts. In 6 months, my left eye has gone from -2.0

to -3.0

> and my right eye has gone from -2.25 to -2.75.

>

> My batter and intestines are giving me fits. I am taking a fiber pill now

> but have yet to find relief. My batter feels like I am going to wet my

> pants at any given moment, only to make it to the bathroom and only have

to

> go a teaspoon or two. Frustrating.

>

> is feeling the frustration of taking care of me too. He is so busy

> trying to find a cure that I feel left alone to fight this battle. He

says

> he can't stand seeing me suffer and knows that there is someone somewhere

> that can make me better. I keep asking him to please stop, we fought a

good

> fight and I need him here with me in the present instead of dragging me

from

> doctor to doctor only to be told the same thing over and over again. I'm

> tired and I hurt and I want some peace. I don't know how to get him to

> understand this... I don't know how to get him to accept what is happening

> to me.

>

> I'll admit. I am doctor/nurse/hospital phobic now. I have no veins that

> function properly and have to be stuck 3 -5 times just to get enough blood

> for a blood test. Forget about keeping a vein in one place to be

> administered fluid or dye for testing.. the veins blow. I'm left with

> bruises that don't heal quickly and phlebitis (spelling). I don't want to

> be tortured any more. How do I get him to accept this. I don't want

> anymore violent intrusion on my body, I don't want any more hospitals and

> procedures. Every time I go, they just make me worse or if tests are

done,

> they just tell us the same thing over and over and over and over.

>

> Yes, I'm a little depressed. I am taking something for it and it helps

but

> at times I am just overwhelmed. How do I get the one I love to understand

> what it is like for me? I'm not going to wake up one day and be well. At

> present, I'm not on any waiting list for a miracle cure. I need some help

> folks. I need help in getting to understand. I know he wants me

to

> keep fighting but I'm tired. Does this make any sense to anyone? Please

> let me know.

>

> Well, now I have 186 emails to be read. Thanks for being there to listen.

>

> Hugs,

> Deborah aka Tenacity

>

>And wrote:

>Well, I just saw Deborah's post and some reply's.. Now it is my

turn.. Yes, I need help. My problem is the following.

1- I cannot and will now wait for an autopsy to find that she does

not have MSA but Something else that all these Doctors over looked.

2- Yes, I got a PET Scan because from what I understand, it actually

tell's if you have parts of your brain disenagranting or not, in

stead of the Doctor's saying, you fit the MSA portion of this PD

disease.

After going to the Washington Forum and listing to the Doctor from

England.. It made me think,, Who Is Right.. In England, one paticular

Doctor who spoke there said to find out about PD, the first thing he

does is proform a FDopa PET SCAN, and If that proves positive, than

he Does a Glucose PET SCAN to determine if you have MSA as well...

Here the Fdopa is not approved. Than you have a Glucose done and

they can't read it. WHAT IS WRONG WITH THIS PICTURE !!!!!

I want some answers. WHAT IF IT IS SOMETHING ELSE.. Oh, I belive she

does have PD, that I personally can live with.. But I need some

honest answers. And I can not let Deborah give up hope untill they

are answered. Not by Guessing... Which from what I have seen so far

is exactly what they are and have been doing.. There are things going

on with Deborah that dont FIT.. I read and listen a lot and than

compare... Too much doesnt fit..

If any of you out there have any suggestions, Please let me know..

You are welcome to write me off line any time.. Thanks, any and all

of your suggestions will be overwhelming welcome.. I just LOVE my

Wife and am not ready to say,,, OK...I hope you understand..

" tenacity's man "