Newby Here

[BlueEyesOhio7]

Hello All,
I have been diagnosed (sorta) by my neurologist. He diagnosed me with Motor Neuron Disorder. I then had an EMG and a nerve conduction test and was diagnosed with Anterior Horn Cell Disease.

My neurologist didn't want to "label" me yet as he is not 100% sure. He says I "probably" have ALS. I am seeing a specialist Tuesday that did the EMG and my current neurologist says this Doc has written books on ALS.

I know what a diagnosis of ALS means. I'm surprised to get close to a diagnosis so soon. I started off with weakness in the legs (started back in November of last year), left hand not working well and having a hard time holding things with it. This rest of my symptoms started February of this year when I started getting horrendous muscle cramps. In April I started getting twitching (fasciculations) all over. With the EMG the Doc said Anterior Horn Cell Disease.

I am seeing this neurologist again who did the EMG June 17th, next Tuesday.

Just wanted to say "hello" and join the discussion.

Lynne

 

[zoohouse]

Lynne, welcome to the forum, but I'm so sorry you have the need of it. Having said that you will find the people here quite exceptional in that they make the effort, (extreme in some cases) to help and support both the PALS (people with ALS) and CALS ( caregivers for people with ALS). This is a safe place to discuss all the emotional stages that come along with this disease, and even to express humour that they have managed to find with the disease. They are invaluable when it comes to suggestions about lifts, PWCs (power wheel chairs), diet, feeding tubes, and equipment that can make your life easier. This is a family, and they fiercely stand up for each other, and make connections that go beyond this site. I myself have received special emails when I seemed to not be around, and as it turns out I was going through a difficult time and it meant the world to me to know that I mattered.

I pray that your progression is slow, and that you have all the support that you will need in this journey. You will be in my prayers.

Paulette

 

[affected]

Welcome Lynne,

I am so sorry that you have the need to join us, and yet this is the best place to be. It's one of many paradoxes you will encounter now.

Please do let us know how your appointment goes on Tuesday. It's another paradox - we want to know and have it labelled yet we don't want the label they are going to give us. We will help you navigate the weird path.

 

[Dusty7]

Anterior horn cell (AHC) disease is also known as Lower Motor Neuron (LMN) disease and also Progressive Muscular Atrophy (PMA). It is on the ALS spectrum, but means you are not showing Upper Motor Neuron UMN) signs so it is at the far end of the spectrum from Primary Lateral Sclerosis (PLS) which only shows UMN and no LMN signs. PLS=UMN signs only. ALS=UMN and LMN signs. PMA=LMN signs only.

PLS and PMA are very rare conditions and many neuros feel that once you are on the ALS spectrum, you will likely develop ALS, but obviously some people don't.

PMA (or AHC) is generally more slowly progressive than ALS with a better prognosis (5-10 years as opposed to 2-5).

So,if your diagnosis is AHC, it's bad news but not as bad as if they tell you it's ALS. I have been diagnosed with AHC--and told it will most likely develop into ALS, but I'm happy to be slowly progressive at this point. Hopefully, it's neither AHC nor ALS, but if you could choose, go for AHC. Good luck!

 

[BlueEyesOhio7]

Hello again,
To add a PS onto my earlier post I had MRI's of brain, thoracic spine, lumbar spine and lower spine along with tons of bloodwork. I guess that is to rule out other stuff that could be causing the symptoms.

Wish me luck (I pray) And will see the specialist Tuesday June 17th

Lynne

 

[Mediasmart]

Lynne...I too have PMA but with some upper motor neuron involvement so technically i'm in your camp but am not progressing very fast. As Dusty points out, PMA has a 5 year of 33% v. ALS at 20% so it is a "count yourself sorta lucky" proposition.

Nevertheless, the folks here are great and inspirational. They don't "***** and moan" and frankly the human race would be a lot better off if everyone took up the general attitude and thankfulness for each day that folks have here.

Welcome. If we can help, just ask.

 

[BlueEyesOhio7]

@mediasmart what do you mean "PMA has a 5 year of 33% v. ALS at 20%" I don't know a lot about this and I am not sure of the terms and their meaning.

Lynne

 

[Dusty7]

"A recent study found the 5-year survival rate in PMA to be 33% (vs 20% in ALS) and the 10-year survival rate to be 12% (vs 6% in ALS)."

 

[MaxEidswick]

>They don't "***** and moan"

oh, I don't know about that

 

[BlueEyesOhio7]

Hello all,
I saw a specialist today. I got diagnosed, 2nd opinion. I'm joining your club. The Doc put me on riluzole or Rilutek and I will see him in 3 months. I am also going for physical therapy.

I think I am going between numb and dis-belief. This is NO picnic.

Thanks for the support.

Lynne

 

[MaxEidswick]

Hi Lynne --

>I saw a specialist today. I got diagnosed, 2nd opinion. I'm joining your club. The Doc put me on riluzole or Rilutek and I will see him in 3 months. I am also going for physical therapy.

:-( *very* sorry to hear your news!

I'm hoping you already know about physical therapy… Make sure you do aerobic exercises but nothing that damages muscles.


>I think I am going between numb and dis-belief. This is NO picnic.

I found myself on an emotional roller coaster for months after diagnosis. No real way to explain or forewarn you. Our mantra has become "it is what it is".


>Thanks for the support.

I think you will find (I certainly have) that the folks on this forum are extremely supportive, encouraging, and share many experiences. Except Mark .

Kind regards and once again wishing you didn't need to be here,

Max

 

[Nikki J]

I am very very sorry. Right now of course you are stunned and confused. You will go through all kinds of ups and downs and they are all normal. We are as Max said here for you. There is life after diagnosis hard as it is to believe. As max indicated you have to be careful with PT. A lot of PTs are clueless about ALS and can hurt you. Is your PT associated with the ALS clinic? If they start talking about building strength and muscle run ( or limp) as fast as you can. But they can be incredibly helpful if they know what they are doing. What are the goals for your PT?

Again really sorry. My motto is one day at a time!

 

[affected]

>They don't "***** and moan"

oh, I don't know about that

well we do, but we do it so well and with such good reason it's seen as just telling it like it is :twisted:

 

[Barbie]

So sorry Lynne, we will all support you in every way we can. Hang in there! we are all pulling for you