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Green Queen

Very helpful member
Joined
Mar 30, 2015
Messages
1,304
Reason
DX MND
Diagnosis
4/2016
Country
AUS
State
Western Australia
City
By the beach
Well. Where do I start?

I came here one year ago, almost to the day, whilst awaiting a firm diagnosis of PLS. 6 months later, I received that diagnosis. I was very happy to have an answer, though it never really sat right with me. I had done too much reading, too much research and asked lots of questions. To me, everything pointed away from MND in any form.

It just so happens, that out of the five main Neuros I have seen, three agree with me.

Unfortunately, they all say the same thing. They don't know. They will probably never know.
No cause. No treatment. No prognosis. No name. No one like me, that they are aware of, alive today.

Which means...what? What do I do now?

We are trying rehab, no guarantees, but I'm willing to give it a shot.

Quite a few of you would have hemiplegia, so I know I'm not really alone.

I haven't told my real world friends yet...hearing certain...words of encouragement...does my head in and makes me feel worse. 'Getting it' really doesn't translate well, unless you really do get it...like here.

I feel slightly hypocritical, being here, but I missed you all too much.

I've changed my...thing...to say I Have a Friend with ALS...that's you lot, Cals included.

If all I can do to support you is pray and occasionally try and be funny...I'm in.

Thanks for putting up with me.
 
Janelle, I'm soooo sorry. Not knowing, no answers, no projections. I understand about those words of encouragement. Truly. You are no hypocrite. You came here honestly and you have made us all love you, so I'm so thankful that you are staying--both for you and for us. If you don't belong here, then where? You are indeed a friend of many with ALS, and we will support you as you support us.

Big hugs.

Becky
 
So sorry. Not knowing is horrible. There are a lot of gray and foggy areas in neurology and certainly some other people like you, those whose neurologists confirm serious findings but can not fit you into any known box. I have met these people here and elsewhere on the net
Hoping whatever it is, it burns itself out and you stabilize if not improve
 
Janelle, you are not a hypocrite in any regard. You had two doctors diagnosis you with PLS. Others that say the cause is unknown. Had you not relentlessly pursued other options, you wouldn't even be questioning your presence here. As for as I'm concerned, you belong here wholeheartedly. And the challenges that you face daily are very much the same as many others here with MND. I'm thrilled you're here and have decided to stay. x
 
I am pretty new here but I have read many of your other posts. Thank you for staying. I can't imagine how hard it is to not have a diagnosis. I thank you for the words of encouragement you have provided others. I believe you get what you give. Regardless of what you have, we can all support you, as you have helped support us. Sending prayers.
M
 
Janelle, I'm a bit speechless again.
You are FAMILY girl, so here you should stay.

Do let us know how the rehab goes, but be careful and remember you know your body best if they try to take you in directions that you are not comfortable with.
 
Janelle, I think your profile should say "other MND." You're way more than "friend" -- it's happening to you. Of course, that is your choice.

Anyway, very glad you are here with us.

Best,
Laurie
 
So glad you are here, Janelle. You have made me laugh til I cried. Hugs! I know that isnt helpful when the rug is pulled out from under you, but I want you to know you are loved
 
Janelle,

Right there with you, sister.

In the land of the "revoked mnd diagnosis but we still don't know what the h.ell is wrong with you" club.

Sorry :(

--Suzannah
 
I think there needs to be yet another subforum here titled something like:
"Been through multiple neuromuscular specialists who have all gone ¯\_(ツ)_/¯ but agree there's a problem"
 
(I'm sorry, but Fiona's post made laugh. Hard. That's *exactly* what all the docs look like. Ha. Thank you.)
 
Absolutely! They try to smile and be positive...that's exactly how they end up looking!!
 
So very frustrating for you Janelle, you are one of our family and I gave missed you, welcome back honey. Luv Gem
 
I am sorry Janelle on the diagnosis but very happy you are. You have been missed.
 
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