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Anja

Active member
Joined
Mar 24, 2012
Messages
91
Diagnosis
06/2012
Country
NL
State
zh
City
The Hague
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! :D

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

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

Jen
 
I finally find your long lost thr ead. Yah, for the NO, A L S. And NO, you can't go.
 
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.
 
I am here and will stay, hugs to you my dear wonderful friends! You help me stay focussed and positive, you are the best!
 
Love you Anja!
 
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!
 
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