Had Neuro Appointment Questions

[Cowboy50]

Thank you Mike, I am concerned that maybe I have not shown where the initial weakness is, I am a big strong guy and have had no weakness that has been obvious, I am hoping that respiratory onset is not now setting in, does anyone know it in the initial onset does the muscle completely die prior to full blown onset? Thank you for taking time to respond, the information here has been very informative.

 

[KimT]

Mild restrictive and mild obstructive can be seen in the normal populations. I've had many pulmonary function tests. The worst one I had was in 2014 and I was very anxious during the test. There are so many conditions and operator differences that I would take ALS of respiratory onset off the table. When I am anxious I do poorly on pulmonary function tests. I have friends without ALS that do worse than I do. Please don't diagnose yourself. The only one qualified to tell you whether ALS is even POSSIBLE is a neurologist who specializes in motor neuron diseases.

I don't see ALS in what you've posted.

 

[Cowboy50]

Fearful for my family, I noticed while traveling home from Chicago last night that my tricep on the right is weaker than the left, right ankle is twinging when I walk, EMG is next week and I am fearful that I have ALS based on my right sided weakness, worried about family, not ready to go down this path, have 2 boys in college, how do we tell them and expect them to go back to school and study when they get this news, I have a 14 year old daughter, she will see my decline 1st hand, so do not wish that upon her, I am supposed to attend a managers meeting next week M-th, I am fearful that my hand or foot goes out while at the meeting exposing this to co-workers when I am not ready too. So many questions and no answers, bless all of you that have been down this path, I am going to need you, could use advice based on this rant this morning

 

[Clearwater AL]

Yes, it was a rant. Think of those who have faced and are living with ALS right now.

You're way ahead of what the EMG will indicate.

Like a previous reply wrote... stop diagnosing yourself you have ALS.

And... more than one very knowledgeable members, in previous replies, have written in their opinion you are not looking at ALS.

Stop posting until you have had the EMG... then post the summary/conclusion usually on the last page. Whining about your fears accomplishes nothing until you have the EMG. We've read hundreds...

Hope for the best... the treatable or curable.

PS Take the time and re-read the replies to all your posts.

 

[Cowboy50]

I have a few questions, new symptoms showing up, left leg has a numb heavy feeling to it, twitching a little as well, not affecting my gait but just showed up today, left side of my face along chin and cheek has been tingling, is this what it feels like when muscles begin to die? I have an EMG Friday but these symptoms are new, most everything has been on my right side up until today, no perceived weakness, tonguer seems to be vibrating when sticking out, I have had a lot come on on the last 14 days is this typical of the disease... looking for anyones feedback on these new symptoms

 

[Nikki J]

I don't think you read the sticky read before posting? If you did and remembered what you read you would know ALS onset does not feel it just stops muscles working. You would also know your tongue will twitch vibrate etc when sticking out.

 

[Cowboy50]

Nikki

I did read the sticky notes, just trying to see if this is the way onset occurs, Could it be a small muscle in my leg that is producing feeling from the other muscles or does that not happen. I am having things happen all over & am concerned I am past the onset despite not noticing any weakness or problems prior, trying to understand if what I am experiencing has been by others before.
Thank you

 

[Atsugi]

Happening all over is not typical of ALS.

ALS is a brain disease that destroys Motor Nerves one by one. Typically, a hand muscle will be affected first. Then, the weakness moves to the next nerve and the next. It takes months or years.

 

[Cowboy50]

Mike so if I had it damage a muscle in one leg, would it most likely move to a muscle in the same leg before going else where? My rear end muscles seem smaller and thighs in both legs but no weakness, just trying to understand how it progresses, I read the sticky but I have nothing failing but could that take a while, one would think of my muscles were wasting it would be in one leg and not both, but I am having issues all over, legs, back, neck, arms etc. this seems to point away from ALS. Thank you

 

[codyclan]

So here's the thing--in ALS the failing happens first, before atrophy. The atrophy is a result of weakness, as the muscle isn't getting the 'move' signal from the brain. So atrophy doesn't cause weakness, it is the result. You don't show signs of ALS, really and truly. In ALS there is no tingling, no feeling, just a muscle that won't respond. You are working yourself up and need to wait for the EMG. It's tomorrow, right? Please log off and stay off of this site and Dr. Google until after you have the EMG and consult with your Neuro, being here isn't helping you.
All the best,
Tracy

 

[Cowboy50]

Had my EMG today and the Neuromuscular Specialist said that all the muscles looked good except for my right calf muscle which has atrophy, but she said that she can see that the damage to that nerve was some time ago and that the nerve attempted to heal, no concern for ALS. She tested my right arm, right leg, left calf and thoracic spine. She said that she can say that today she see's no sign of ALS. I asked her why I had atrophy and she said that with 2 back surgeries and buldging disks at L4, L5 and S1, she attributes it to that. I asked her if I should be concerned going forward and she said that in her 17 years working the ALS clinic she has only had one patient who came in for faciculations,, was cleared, and then came back with weakness and ultimately ALS. She said that my facsiculations appear to be benign in nature and of no concern. I then asked her is she clearing me because she see's no clinical weakness or did the EMG have more to do with it, she said that the weakness points away and that the EMG confirms her decision. I did ask her if in her opinion weakness presents prior to atrophy and she said yes, in her experience weakness comes first.

I will say that the atrophy is concerning to me but I must take this good news and move on. I want to thank everyone for your responses to my posts and for your helpful information and words of wisdom. I will be making a donation to the site and that you all again. I am now going to move on and put this out of my head, bless all of you!

 

[Nikki J]

That is great news and everything you were told makes perfect sense.

Best of luck and enjoy a long happy life

 

[Cowboy50]

All,

One last question, with the cooler weather I tried on some pants and my thighs and rear end seem to be much smaller. I cannot fired or tense my glutes as much as I remember being able to in the past. My concern is, could ALS be present in my glutes causing them to atrophy. The Neuro put a needle into 2 thigh muscles and she reported that she saw no signs of active denervation in any of the muscles, (4 in right leg, 4 in right arm, 1 in left calf and I in middle back) she tested. If I have atrophy occurring in my glutes because of ALS would have something shown in all the other muscles she tested. I have definatley lost mass and my twitching started in my rear end, wondering if I should have an EMG of my glutes or am I over thinking this and move on?

Thank you

 

[lgelb]

Yes, move on. You have sacral (S1) nerve root damage and that is where the glutes are.

If I were you, I'd ask for a PT referral to evaluate you to see if therapy might improve your situation.

 

[Cowboy50]

Laurie,

Thank you, one other thing I have noticed is my left side of my abdomen just below my ribline seems swollen and stiff, it hurts at time kind of throbbing and feels tight like a ball, could this be spasticity? I have all these things going on in areas that she did not test, if this spasticity was from ALS, located in my upper abdomen just under my ribline, would not have something shown up when she tested my thoracic spine? The EMG with no sign of active denervation was great news but these other symptoms have me concerned. Please let me know your thoughts.

Thank yiou