ALSFORUMS.COM   - ALS/MND Support Group   - Fibromyalgia Support Group   - PLS Support Group   - PBP Support Group   - PMA Support Group   -  
Old 06-15-2012, 06:15 PM   #1 (permalink)
New Member (Say Hi)
Registered Member
 
Anja's Avatar
Join Date: 2012
City: The Hague
State: zh
Country: NL
Diagnosed: 06/2012
Posts: 89
Anja is on a distinguished road
Send a message via Skype™ to Anja
Default Good and bad news!

Hi dear friends,

Sorry i was gone 4 so long again, a friend of me is dying, so that is why

I had my diagnose today: I have NO ALS! That is such great news!

But I DO have a neuromusculair disease only they have no clue which on and/or what the cause is...

So I am confused! What to do! It is nothing psychological, they only have no name for it yet, they see the clinical symptoms at 15 out of 100.000 people.

I will see a rehab doctor and go into a program to see what they can do 4 me.

Mixed feelings, so happy i don't have ALS, confused because i don't know what i have and what future will bring me!

Right now i feel tired, happy and also frustrated. I will go 4 it in the program, i can't believe there is no "real" diagnose, i wish it was all between the ears so i could see a shrink and all gone were my serious symptoms, but no... all left is rehab without knowing if it will work.

Docters are convinced something is seriously wrong, but have no clue what it is exactly, vaque diagnose, that is frustrating and confusing as well, i am very very happy i don't have ALS but on the other hand i am left in the jungle understand what i mean?

I promise i will be online more from now on, if you still want me to be here of course I love you all and i want to be part of the support team, you are all wonderful people!

And btw if anyone has a suggestion 4 me what to do now it is very welcome... it is so confusing, it might still be MMN, but it is too early to tell... will post on the MMN forum 4 questions...

As 4 now: hugs to all of you, and yes in the rant part of this great family, i think you understand why... didn't know where to post and also felt need to rant a little bit because i still know nothing!

Take care and have a wonderful weekend!

XOXOXO

Anja is offline  

Old 06-16-2012, 01:02 AM   #2 (permalink)
Senior Member
Registered Member
 
panguinjen's Avatar
Join Date: 2012
City: Stockton
State: CA
Country: US
Diagnosed: 00/0000
Posts: 523
panguinjen is on a distinguished road
Default Re: Good and bad news!

Anja,
Great news but I understand the frustration! Please stay!

Jen
panguinjen is offline  
Old 06-16-2012, 01:19 AM   #3 (permalink)
Very Helpful Member
Registered Member
 
Toto's Dorothy's Avatar
Join Date: 2012
City: Emerald
State: Kansas
Country: US
Diagnosed: 11/2008
Posts: 1,019
Toto's Dorothy is on a distinguished road
Default Re: Good and bad news!

I finally find your long lost thr ead. Yah, for the NO, A L S. And NO, you can't go.
Toto's Dorothy is offline  
Old 06-16-2012, 07:23 AM   #4 (permalink)
Very Helpful Member
Registered Member
 
momap53's Avatar
Join Date: 2011
City: EGA
State: GA
Country: US
Diagnosed: 05/2011
Posts: 1,631
momap53 is on a distinguished road
Default Re: Good and bad news!

Happy that ALS is off the table! So sorry they don't have more answers for you.
Good luck with the rehab and let us know how it's going.
momap53 is online now  
Old 06-22-2012, 06:51 PM   #5 (permalink)
New Member (Say Hi)
Registered Member
 
Anja's Avatar
Join Date: 2012
City: The Hague
State: zh
Country: NL
Diagnosed: 06/2012
Posts: 89
Anja is on a distinguished road
Send a message via Skype™ to Anja
Default Re: Good and bad news!

I am here and will stay, hugs to you my dear wonderful friends! You help me stay focussed and positive, you are the best!
Anja is offline  
Old 06-22-2012, 06:58 PM   #6 (permalink)
Very Helpful Member
Registered Member
 
Ms. Pie's Avatar
Join Date: 2011
City: Colorado
State: CO
Country: US
Diagnosed: 10/2010
Posts: 1,723
Blog Entries: 2
Ms. Pie is on a distinguished road
Default Re: Good and bad news!

Love you Anja!
Ms. Pie is offline  
Old 06-22-2012, 07:22 PM   #7 (permalink)
New Member (Say Hi)
Registered Member
 
Anja's Avatar
Join Date: 2012
City: The Hague
State: zh
Country: NL
Diagnosed: 06/2012
Posts: 89
Anja is on a distinguished road
Send a message via Skype™ to Anja
Default Re: Good and bad news!

Love you big time Marta, was about to call 911 because i didn't hear from you Hugsss and hope all is well for you, if not more hugssss XOXOXOXO!
Anja is offline  
Closed Thread

Tags
als, clinical, confused, confusing, diagnose, dying, early, family, frustrated, mmn, questions, rant, support, symptoms, wrong


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools


Similar Threads for: Good and bad news!
Thread Thread Starter Forum Replies Last Post
Good news & bad news... what a pair! Jeff Long People With ALS - "PALS" 34 12-01-2011 05:20 PM
Is this good news or bad news? NotALS! Do I Have ALS? Is This ALS? 17 09-09-2011 09:23 AM
some good news baker5131 Current Caregivers (CALS) 3 05-13-2008 01:08 PM
Good News/Bad news ltr General Discussion About ALS/MND 28 03-18-2007 05:26 PM
Good news Paradox General Discussion About ALS/MND 11 01-30-2007 10:43 PM


    
   
   
   
   
  ALSforums - Get help and support with ALS/MND