OFF/ON LIST ** yeah 1 more

[Guest guest]

I am re-posting a message I took over an hour to try and post Sunday.

Don't know why it didn't post, but darn I was not up to trying again

until today and now it seems I'm jumping on the bandwagon instead of

being original. I will try to remember (haha on that) some of the

main points I wanted to make.

When I saw all of the discord w/in our group I wanted to say

whooooaaaa. I joined this group in August of 2001. I still remember

reading through my tears all night long. Wow, I am not alone with

these unexplained symptoms. About 1 month after me Wanda joined, then

Steve, Aletta in Oct. and then along came Belinda. Dennis was here

right before me. I guess I related more to these patients because we

came to this group about the same time and were what many here

considered the 'youngins'. Most of us had no dx and many similar

symptoms and so many questions. I was very pleased when Dennis,

Belinda and Steve finally got good docs and a working dx. I felt

their relief to getting answers. I have never wanted to mislead

anyone in this group and always state I have no working Dx other than

OH and other unknown autonomic system dysfunctions. I am smart enough

to look at the diagnostic links here and see many of my symptoms

listed. Numerous test results included. I have fatigue, low normal

body temp., bp and heart issues, twitching and spasms

(fasciculations),balance problems, drooling, voice volume probs_ if I

don't work on it, gait probs, urinary retention, constipation,

thyroid, liver - kidney problems and until it was just removed gall

bladder etc etc. I know how a working dx will help my gastro and

cardio docs understand more what's going on and be able understand

what to look for. From the 1st day here I have been so blessed with

info and support. I have encountered many great ppl. My GP and Gastro

docs have mentioned PAF and SD to me, My neuro has not yet, and I am

letting her do her own DX. that is why I don't post unless I want to

ask a question, support, encourage or just hug someone. I will only

put info I know as doc-backed facts on here. As a patient I know the

frustration, pain, and many other symptoms can make me a little more

sensitive at times to others comments>> just ask my hubby<.

Aletta my heart has went out to you since the 1st posting that I sent

to you. I know things are really tuff trust me I do. I have respected

that and pray for you and many others daily. I remember all your

eager questions like mine, wanting names of docs, health answers etc.

I remember feeling your frustration at not being taken seriously and

your shrink was the person that 1st suggested SD. Then I remember you

getting a good new GP in Nov. I hate I missed your posting on the DX

I would have loved to rejoice with you at finally getting answers and

help.I guess I was too busy w/ test and doc appts and missed it. I

know the only way to have confirmed dx is autopsy and none of us

patients want that. I do respect you and appreciate all the info and

support you have taken the time to try and help others. I do agree

with Bill however on the cautious manner in which we need to use

here. If I were brand new I would be swallowing up any and all info

here I could> I did when new<. I am not defending Bill he is very

capable of doing that himself. He did many times try to tactfully

address some of these issues. Bill is not a nasty man! A nasty man

would not have taken such loving care of an ill wife and continue to

try and help all of us when he could so easily walk away. We are like

family here and will have disagreements and different personalities.

We need to agree to disagree and be adults. No matter what my dx I

have gained so much from so many here. Bill and I may not agree on

things, BUT he respects my opinions and me his. He has seen me be so

cautious not to mislead anyone and say to all I have no working DX .

so maybe I help contribute to that aspect of his comment.

Bill if you leave this list you will know what the B part of my PB

club is and feel da' cane!!

Aletta I hope you don't give up on the support and friends you have

made here. I know you have gained much info just like me, but try not

to take all things said as attacks. We all only want to help each

other....... sending cyber hugs cause I think you need them ((())),

but understand if you don't want them.... Rose