Worried about symptoms

[Mike31]

Hey everyone, thanks for taking the time to read this.
I am 25 years old and have been having some weird symptoms for the past year and a half to two years.
I started noticing when I was working out in the gym that I had a feeling of pins and needles in my hands and some numbness. My first thought was a pinched nerve. I finally went to see a neurologist and had a ncv test where it showed that my nerves aren't firing as quickly as they should be for my age. He tested both arms and one leg. Then he did an EMG test where my results for that test were normal. My neurologist seemed confused, which wasn't comforting.
The more I workout, the more my symptoms seem appear. I have stayed out of the gym for about two weeks and things seem to be going okay.
I've been dealing with this for almost two years now and it has not progressed. I feel muscle weakness in my hands, but only when they are feeling numb. It's not a constant weakness.
Since ALS Is so rare it's hard to find good information on how the disease actually starts.
A big thing that was worrying me was at one point for a few days last month it was hard to button my shirt. And I have read that is a symptom of ALS. That has since gone away and I am back to being able to do it normally again. Is that something with ALS that would come and go?
Thanks for everyone help. I am very concerned.

 

[Nikki J]

Abnormal ncs normal emg points to not ALS. Getting back function ( shirt buttoning) points to not ALS. Feeling weak, pins and needles,numbness not ALS.

Continue to work with your doctor but not ALS symptoms fortunately

 

[Mike31]

Thank you for replying.
I have never dealt with health problems like this before. I don't know much about the nervous system, so waiting for future appointments makes me worry. My doctor took some blood to run a test, but hasn't come back yet because of the holidays..
he sent over what he thought his results were to my military doctor and he believes neuropathy. I was a little confused because when I was at the appointment he seemed very confused, and by what I understand neuropathy is common, so why was he so confused during my appointment.
He also wants to send me to a neurologist who can test for more things. Which has me a little confused. He says neuropathy, but wants to send me somewhere else. That worries me. That maybe my doctor is unsure..

 

[Atsugi]

You can always ask the doctor to explain himself.

Your posts showed no indication of ALS whatsoever.

Perhaps I can help a little by giving a tiny description of the new onset of ALS.

ALS is a brain disease--not a muscle disease. In the brain, something (we don't know what) attacks the nerves that control the voluntary muscles. This shows up on EMG quite well. In fact, it is evident on the EMG before you have any actual symptoms.

When ALS destroys a motor nerve, that nerve can no longer send a "go" signal to it's corresponding muscle. No more. Ever again. Since that muscle isn't getting a signal, it doesn't do anything. It just lies there, limp, useless, paralyzed. This is true weakness.

Usually it starts in the hand muscles, or the foot. The disease continues in the brain, destroying the next nerve, and the next. So, after you've lost muscle movement in your hand, for instance, the next muscle's nerve is affected. One by one in serial fashion, you lose the ability to move each muscle, until your whole arm or whole leg is useless. And so it goes.

Notice that the sensory nerves are not impacted. It doesn't hurt when your muscle becomes limp. There's no feeling of stinging, buzzing, "feeling funny" or anything else. Since the muscle isn't doing any work, there certainly isn't any feeling of fatigue, exhaustion, or even a "weak feeling." Nope. The muscle just doesn't go, no matter how much you want it to.

On average, this happens (if it happens at all) when a person is about 65 years old. While it is possible for a 25 year old to get it, I've never seen that happen. In the thousands of cases I've seen (for instance, in a membership database), not one was so young.

If you started having ALS two and a half years ago, the odds are that you would be dead by now, or at least totally debilitated in a wheelchair.

If I were you, I'd breathe a sigh of relief, laugh off any possibility of ALS, say thank you, and go enjoy myself while your doctor tries to figure out what's going on.

 

[Mike31]

Thank you mike.
I didn't know he thought neuropathy until my military doctor called me and said your neurologist sent your paperwork over and said he believes
Neuropathy. So now I must follow up with my military doctor next week. It's frustrating that I must have an appointment with my regular doctor rather than the neurologist who did the testing. But that's the way the military likes to work. But when I left the appointment he left me under the impression that he was stumped and didn't know what was wrong with me.

 

[Mike31]

Sorry mike, when I first read your reply to me it didn't show me the entire post. Just the first two lines. Thank you for clearing up those things for me. That puts my mind a little more at ease. Thank you so much for taking the time to help people.

 

[Mike31]

Hey everyone, I am not able to get into see my doctor again until Jan 30. I have been doing my best to relax and try not to think about it, but I am having trouble doing that. I understand that ALS is not very likely, seeing as I have had this problem for 2 years now and I have no had any progression. Like I said, it seems I only have the pins and needles symptom in my hands after using them for something strenuous, like working out in the gym. The only time I feel the "weakness" is also after that. It can sometimes last a few days. Once I quit the gym, it goes away. But now my brain is running about a million miles a min... could it possibly be something like PLS? I know that the progression rate of PLS is much much slower.. so maybe it is possible that right now this is my only symptom... I'm sorry for returning. The long wait I have to see the neuro is making me very on edge and nervous. My NCS was abnormal, my nerves werent responding as fast as they should, yet my EMG was normal. Thank you.

 

[affected]

Please could you read the sticky titled READ BEFORE POSTING.

I wonder if you would also use paragraphs as lumps of text are difficult to read, especially for our PALS.

No it doesn't sound like PLS. They think neuropathy and really your symptoms tend to support that. Let your doctors do their work, even if it takes time. I know the waiting is hard. See if you can get on a cancellation list which may bring your appointment forward.

Until then, make the most of every day you have. Regardless of the diagnosis you end up with, you won't get these days back to live over again. All the best.

 

[ShiftKicker]

Nope. PLS is not what you described. PLS is very apparent to a neurologist based on simple in-person neurological testing. It does not show via NCS- that is a peripheral nerve issue. PLS is a motor control issue. Pins and needles are sensory. PLS progresses as well, though not generally as quickly as ALS- and it would definitely be a noticeable change over 2 years.

Best wishes with your next doctor's appt.

 

[Mike31]

Thank you both so much. I was posting from my phone, and didnt realize I forgot to separate.
I have read the sticky, and notice my symptoms do not match. I was just confused as to what the difference was between ALS and PLS.
I tend to get worried when i feel the weakness, but it only happens after using my hands for an activity such as working in the gym.
I was hoping for some answers to support neuropathy in my blood work. But my blood work came back normal. So still no answers.

Also, I was wondering if some MND are sensory? or do most of them tend to deal with more motor nerves?

 

[affected]

MND = MOTOR NEURONE DISEASE. So NONE of them are sensory.

 

[Mike31]

I feel like an idiot for asking that question. I think i meant it more so as can some of them have sensory issues along with motor. That was not my smartest moment...
But this forum has been so helpful to me. Honestly, until I started having some health problems, (which I realize is so minor compared to what people here are dealing with.) It brought to my attention so much more about these diseases that I didn't know much about beforehand.
Is the best place to help by donating to this forum, or would it be to donate for research of these diseases? Or does by donating here, do that also??

Thank you all. It means more to me than you all know, to have someone who doesn't even know me, take time out of their day to calm my nerves, when you are all dealing with much more serious issues. Bless all of you.

 

[Nikki J]

Donating here keeps the forum running. We appreciate any help you care to give.

Contributions to research are much needed too of course. You are near Duke. If you are interested look up Duke ALS clinic and you will find a link telling you how to donate specifically to the clinic. Dr Bedlack does good work. There are many other choices of course.

Anything you can give to either would be more than appreciated.

Dr Stanley Appel once testified to Congress " ALS is not incurable- it is underfunded"

 

[Mike31]

Okay great. I actually have an appointment with a neurologist at duke. That is where my next appointment is. Maybe I can get so information about how to go about donating while I am there. I have read about dr bedlak when researching Duke.