Do I have ALS? Please help me. I am desperate.

[Kool Buddee]

I am a 24 year old female who has been having muscle weakness, cramping, and twitches for four months. I went to the neurologist and he did an EMG and a nerve conduction study and said that my neurons are "firing too fast." What does this mean? He never told me.

In addition, how long does ALS take to progress?


How fast does it take for the weakness to take over until one arm is paralyzed, and then a leg, etc.? All my blood tests came back normal and so did my MRI of the brain.

I am convinced I have ALS and am not able to function because I am severely depressed about this. My muscles get fatigued really easily as well when I walk and I get out of breath.

If someone could possibly help me, that would be so wonderful and greatly appreciated. This is eating me alive.

 

[TedH5]

You would need more info from your Neuro for us to fully answer your question. We obviously are not Dr's and some Neurons are designed to be fast spiking aka fire fast. That being said I am not an expert. What did your Dr tell you it meant? What does he have you doing as far as follow up?

As far as muscle weakness did your Neuro find and confirm weakness to you in your clinical exam? Please do not diagnose or convice yourself of anything. ALS diagnosis is one of elimination, meaning everything else must be ruled out and you must meet strict criteria before a Dr. will tell you that you have ALS.

They did an Mri of your brain how about your spine?

My advice is be your best advocate, ask questions, follow up with your Dr and if you are not satisfied with their plan of action find another Dr. What is the current next step that your Dr has you doing?

Take a deep breath and allow the process to play itself out.

 

[patricia1]

my best advice is to just go on with your life as best you can .I never made als part of my life .Do everything you still can do.I continued to work three days a week and watch four grandchildren two days a week .I couldn't give in .Thats what I did .
Stress worry obsessing will made you worse. Never give in or up

Pat

 

[Kool Buddee]

Patricia,
You are immensely inspiring and strong. And thank you for answering very quickly. What you just said changes my outlook on everything. You are very right. I'm sorry about your situation but could learn from you. Your grandchildren are lucky to have you. And good luck

 

[trfogey]

The best thing you can do for yourself is to stop mistaking your computer for a doctor. No doctor has told you that you have a serious disease -- and your neurologist had ample opportunity to do that -- your computer did. Or at least you think it did. It didn't really, but you'll need some work on your health anxiety before your mind will grasp that.

If you want to feel better, stop believing you have ALS. There is plenty of good evidence that would justify that belief. It's up to you.

Good luck to you.

 

[Kool Buddee]

Hi TedH and thank you for your quick reply and taking the time to write it out. I had an MRI of my brain and spinal cord and he told me everything was normal. My Dr. told me that fast neuron firing could be an early symptom of ALS but could also be a pinched nerve. He said ALS is such an ambiguous diease and you have to "wait it out."

 

[Kool Buddee]

Thank you for your response.

 

[trfogey]

ALS or a pinched nerve? Sounds pretty hokey to me. I'd recommend a second opinion.

Given that choice, why did you pick ALS as the condition that you believe you have? Seems to me that a pinched nerve would be far less emotionally distressing while you wait out ALS, rather than the other way around.

 

[Kool Buddee]

Trfogey. Can you tell me about your experience? And yes, I don't trust doctors opinions THAT much. But I do trust them more than the internet. I do my own research to be my own advocate. I chose ALS because the symptoms mimiced my symptoms the most. Muscle weakness in the limbs, cramping, and twitches. All the other tests came out normals, so it rules out anything else. I'm just in shock still that they have not found better treatment.

 

[johnnyliverpool1]

kool...on the basis that u buy 199 dollas worth of lottery tickets every week for 10 years the odds r u will not win....the roughly same odds that u will not have als...so stop willing yourself the most devastating desease know to man........best to u ......

 

[TedH5]

Kool...did the Neuro or any other Dr see and confirm weakness during the clinical exam? Also did they do an NCV with the EMG? If so how did the NCV turn out.

I have heard trfogey many people some wise advice "It is not ALS until it is not anything else" Please remember that.

 

[Kool Buddee]

TedH5,
They confirmed weakness in my neurological exam and they did do a NCV and EMG. The only comment the neurologist made was that my neurons were firing way too fast. How were you diagnosed? I would really love to know about your journey.

 

[TedH5]

What is the Neuro's next course of action for you? Additional tests, follow up, another EMG, MRI with contrast? I am in no position to advise you whether you do or don't have ALS. Just keep in mind ALS is extremely rare so it is much more likely that something else is wrong.
As far as your question about my journey I do not mean to be rude but I do not think it is wise for you to obsess about ALS at this time and if I share my story then you may latch on to one thing in my story that you
feel you can identify with. Everyone's story is different and we have many people come here concerned they may have ALS and the majority of them leave because they did not have ALS.

The best thing for you to do is enjoy the holidays follow up with your Dr's and ask lots of questions and allow the process to play out. If your Dr mentions ALS again then see an ALS specialist because most Dr's have never seen an actual case of ALS.

Stay positive and enjoy life!

 

[wright]

Get a copy of your EMG and post it into this thread and I'll tell you what it means and I promise not to use words like "your neurons are firing too fast" because I have no idea what that means. I'm sure your neuro was trying to put it more layman-like terms but that really says absolutely nothing. In the meantime, your symptoms can be due to a gazillion different things and your neuro unfortunately named only two of them. Why, I don't know but it might be in your best interest to get a second opinion.

 

[trfogey]

Trfogey. Can you tell me about your experience? And yes, I don't trust doctors opinions THAT much. But I do trust them more than the internet. I do my own research to be my own advocate. I chose ALS because the symptoms mimiced my symptoms the most. Muscle weakness in the limbs, cramping, and twitches. All the other tests came out normals, so it rules out anything else. I'm just in shock still that they have not found better treatment.

Kool,

My experiences won't be any help to you. My case is practically textbook, except for the speed of progression. Your experience, however, isn't really clear from what you've written here. When and how did your problems start? What area of your body was affected first and what were the symptoms?

I'll be blunt with you -- the story you've told is, in a word, unbelievable, at least from an ALS/MND perspective. Motor neuron diseases just don't work the way that you've described your condition's evolution. They don't pop up and run rampant through the body in a matter of weeks. Other diseases, possibly, but not MNDs. And, as wright has said above "neurons fire too fast" isn't an EMG finding and it strains my BS detector to it's to believe something like that was even said. That sounds like something that G88gle Translator might have said, not a flesh-and-blood neuro. And the "it's ALS or a pinched nerve" and "sometimes you have to wait out ALS" comments aren't even good lines for a very bad medical movie.

If you want us to help you, you're going to have to get a grip on yourself and start going through all the tests you've had and the opinions of all the doctors you've seen and put together an accurate account of what has happened, how it happened, and what the doctors have said about what might have been the cause of what happened. There are a lot of steps that go into an ALS diagnosis and you've left out a bunch of them. That's what makes your story suspicious in my view, and most of us here can better spend our time helping people that don't want ALS, rather than trying to figure out what the reality is with someone who appears to want the disease.

Think about what I've written here and take some time to get your story and your thoughts organized before you post again. Hysteria isn't going to get you any answers or give you any relief. Patient and systematic diagnostic work will, but you have to allow it to happen.