Newly Diagnosed. Just Saying Hello.

[LifeEnthusiast]

Just wanted to say hello. I have lurked at this forum since ALS was first suggested as a possible diagnosis a year and a half ago. It certainly helped me immensely. During that same time, my amazing neurologist looked for any other diseases to explain my symptoms and progression. No stone was left unturned, no matter how unlikely. We even tried a six-month course of IVIG.

Earlier this week, I was officially diagnosed with PMA. No upper motor signs at this moment. Plantar responses went from flexor to mute, which has perplexed my doctors.

Anyway, after diagnosis I clicked on the PMA Support Group link above, but it appears few use it. I am assuming with a PMA diagnosis, it is okay for me to remain in the general ALS and MND Support Group.

Wishing everyone a positive Friday.

 

[Green Queen]

Hello lif, and welcome. I'm pretty new too, with PLS. I really don't want to answer the question of where to post, I will leave that to someone who knows for sure.
Sorry I know nothing of PMA, but will read up to encourage and support you on your journey.
God bless, Janelle x

 

[Nikki J]

Hi and welcome. Yes people with PMA may certainly post wherever. We have a couple of people here with PMA I think and they hang out with the rest of us. There is a fine line between PMA and lower motor dominant ALS anyway
If you live in the US it may be easier to get ssdi if you can get a label of LMN dominant als ditto if you are a vet

 

[Nuts]

Hi and welcome. I love your name! To be honest, I usually click on the new tab, which mixes up all the postings that have been made since my last visit. I think of it as the melting pot approach to ALS1

 

[LifeEnthusiast]

Thanks everyone. Even though I had been expecting it, I'm struggling to get my head around it all. Thanks for the warm welcome and support.

 

[Nikki J]

No matter how much you expect it it is a terrible shock. I knew I carried the genetic defect c9. I knew I had symptoms and I was still shocked. It does fade after a bit and life goes on. If you have not read the stickies please do. We look forward to getting to know you better

 

[LifeEnthusiast]

Thanks, Nikki. I will read the stickies now.

 

[JimInVA]

Greetings! With the name LifeEnthusiast, I'm encouraged that you believe that you still have some good pages yet to be written in your own Book of Life. I'm sorry that you find yourself here... but glad that you've given us a good look and have decided to join in. As you already know from your previous perusal of the forums, there are some mighty fine people, here. Be sure and ask questions as they arise. Removing the "?" marks will go a long way towards making each day a better one. Again, WELCOME!

Jim

 

[affected]

Welcome to the family, though I am sorry you find yourself here

 

[LifeEnthusiast]

Again, some great advice and warm welcomes. It's greatly appreciated. I am not happy to be here and yet happy to be here. Or better said, happy this forum and kind people exist. I look forward to asking questions, learning more, and finding a way to muddle through all of this. One day at a time.

 

[lgelb]

LE, plantar reflexes wax and wane, and interpreting them at a given moment can be more of an art than a science. Nothing to be perplexed about, yourself. If/when you have UMN signs, they'll be more obvious.

Welcome to a group w/ many fellow LEs.

 

[LifeEnthusiast]

It's amazing how much you learn about your body with this disease. I couple of years ago I didn't even know what plantar responses were, let alone upper and motor neurons.

One of my neuros says flexor responses that become mute signifies a transition to extensor reflexes. I've read this is true countless times. I've also read quite the opposite. I think its like the disease, you just never really know what direction it's going to take next. A good thing on one hand and an equally distressing thing on the other hand.

My brain is still in the non-accepting stage, especially when I first wake up in the morning. But as the day moves on, it becomes real again. I'm trying my best not to let the fear consume me. It's early days and emotionally I think time will make it easier to adjust. None of us really have a choice either way.

I took everyone's advice and read the stickies. There was one I stopped short of finishing because I found myself feeling overwhelmed. I'll read the rest when I'm emotionally better equipped.

The three part video was of great value too. But again I only watched the first two. I'll watch the third part later.

I have lurked through past posts of the active members I see here, and have found that has given me the inspiration that I need not to be defeated. I'm getting it. Life will be complicated, life will be different, but life will continue -- and still have purpose, value, joy, laughter and meaning.

So thanks to everyone for their welcomes and support. And thanks for putting your journeys out there in this forum, it is an enormous help for those of us just starting ours.

Hope everyone has a wonderful Sunday.

 

[affected]

VERY IMPORTANT

Just take in what you can at the moment. Skip over the bits that are overwhelming, give yourself that break.

It's all here to go back to at the time you need it.

Be kind to yourself, these early months are so tough as you try to get your head around the reality. We know it and are here.

 

[MaxEidswick]

>I'm trying my best not to let the fear consume me. It's early days and emotionally I think time will make it easier to adjust. None of us really have a choice either way.

Lastly, anxiety can be debilitating so beware. klonopin helps me.

snip ----
ALS is about living, not dying!

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like all the others, sorry to meet you here but welcome!

The next weeks, months will be an emotional roller coaster. Try to go with the flow, expect fear, anger, bitterness, and a new awareness of life. I have found that being active here on these forums has helped me in way I cannot explain, but you will see.

before trying miracle cures, etc., ask here, go to alsuntangled dot com.

Lastly, anxiety can be debilitating so beware.

Lastly, lastly DON'T FALL, take vitamins, keep your calorie intake up, and stay away from sick people, especially w/ respiratory problems.

Kind regards and warm welcome,
------

> I do know it is healthier to be thankful for what still works than to resent what doesn't (easier said than done )

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Max - Sunday, May 03, 2015 11:06:09 AM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


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[LifeEnthusiast]

Thanks kindly for the warm welcome and sound advice, Max.