New Confused and Scared

[MikeJC]

I'm Mike,
I was diagnosed 3 years ago with PLS, I could sort of cope, was coping, with even though I had no idea how the condition would progress. Recently the hospital repeated those electro tests (I can't remember what they are called) as a result on Friday they amended the diagnosis to ALS. I do not mind admitting I am having difficulty dealing with that.
So many questions: Are they right (I think my consultant is an idiot). What can I expect? Is Riluzole worth taking?

If you read this, thanks for taking the time. I just needed to ut it out there.

Mike

[Ellie]

A warm welcome to the forum Mike and sorry your PLS diagnosis was reclassified to one of ALS - it isn't unusual for this to happen and some Neurologists don't give a PLS diagnosis until after 4yrs with no lower motor neuron involvement, not that that makes you feel any better...

Are they right (I think my consultant is an idiot).

The EMG test would have picked up tell tale abnormalaties which, in conjunction with your other symptoms which prompted the PLS diagnosis, gave the Neurologist the 'evidence' to change your diagnosis. You could ask for a second opinion if you really don't trust your current Neuro.

What can I expect?

That's the $64,000 question Mike. There's no clear path to ALS - you may continue with slow progression if you are what's called upper motor neuron dominant,or your rate of progression may speed up.

Have you noticed any differences in your disease pattern of late?

Is Riluzole worth taking?

Yes, I think it is. Some people get side effects from it and decide to, or have to stop taking it, whilst others take it without side effects - you may as well try it, that's my view anyway.

Cool beard, btw.

Love Ellie xx

[Deb]

Hi Mike and a warm welcome to the forum,

I'm so sorry you have such alot to deal with. Im really not an expert so I can only go on my experience. I was diagnosed 4 years ago and was told ( after 2 mnd neurogist opinions ) that my emgs showed no evidence of upper motor neurone involvement.

They said it was the PMA( flail leg !) variant of MND but it could progress to ALS. The only way to tell is regular EMGs . I declined because I thought it will be what it is and I can obviously tell when I have progressed. Thats just me, however and others might want to know.

I was told I could have riluzole when and if i felt strongly about it but it apparently it has little impact on PMA. However, others take it with minimal side effects.

There's alot for you to take in at present so take care of yourself.
Love Debbie x

[LindaB]

MikeJC welcome to the forum & sorry for your diagnosis.
I take Riluzole & happy to unless any adverse side effects.
Look forward to hearing from you 👍🏻

[Shaun]

Hello Mike and welcomed
I’ve had my diagnosis changed from ALS flail limb to an LMN variant of ALS, vague I know, informed by letter, so haven’t got a clue what that means.
I am slow, very slow progression, I just try to keep going on as normal. What I’m trying to say , you’ve been coping for the last 3 years, what’s in a name , granted PLS doesn’t have the end result, but if you are slow progression, you could have 10,15, 20 years . Putting a positive spin on it.

I take Riluzole , no side effects , and it keeps my wife happy that I’m taking something
s.

[Rosemary6NT]

MikeJC hello and welcome. Sorry for your new diagnosis. You should get lots of good information and support here

[PeterPan]

MikeJC Ellie and others have given you sound advice. I’ll just add that I’ve taken Riluzole for 15 months without any problems. At one stage I thought it was making me feel more exhausted, so I started recording how I felt in a ‘fatigue diary’ and stopped taking it for a week. No difference so I started again.

Hopefully once you are less confused you won’t feel so scared. Fear is a negative response that doesn’t make you feel any better… but you know that.

Welcome to the forum. Best wishes.

[MikeJC]

Thanks guys for your responses. Good reassurances and food for thought. I really appreciate it.
Ellie, the beard had to go. I was getting more food in it than was making it to my mouth. I find I have to eat with a spoon these days which is a recent development that had been creeping up on me.
I'm off to explore some of the other things you have highlighted. I'm in this so I might as well learn as much as I can.
Thanks again.
Mike

[MikeJC]

By the way Peter I've book marked your diary

[matthew55]

I'm late again but welcome from me. Look forward to hearing from you. 👍👌😊🍪xx