Newly diagnosed, processing, looking for others experiences

[fo mnd slow pro]

Hello,

I'm a 38 male, diagnosed with "focal motor neuron disorder" that is "slow progressing" last Friday.
My neurologist told me exactly this much and told me we'll see each other in 6 months and left on vacation.
Needless to say I went on a spiral with my wife, seeing all our future plans being destroyed.

Since then we tried getting in touch with any neurologist that can explain anything, what it means. After studying for the last 4 days I understand what this is and this is where I'm going to find the info that will help me either face the truth or kill my anxiety.

My story:
Around 7-8 years ago I noticed a small atrophy in my left forearm and shoulder (deltoid),and very successfully ignored it!
6 years ago I dislocated my left shoulder in a small electric vehicle accident. Didn't take care of it very well and didn't do the proper recoup so it became a little smaller and never actually got full muscle mass back. Hand and arm function was there only affected by what seemed to be an improperly healed dislocation (less strength in my shoulder)

Since then I:
Moved to another Country
Got another Job
Got married
Kept being active with swimming and basketball.
Biked.
Traveled.
Walked
Hiked
Lived my life
Everything fully functional, just with a weaker arm

About 2 years ago I finally decided to go check out my little shoulder problem (no other symptom) and ended up at a neurologist which started me on a journey that brings us to last Friday.

Since then I've been in hell.

Reading up on the info made me check all my body and noticed small size and shape changes in my left calf.
I also started becoming hypersensitive about my breathing and my swallowing ability, which I am now convinced are affected by my condition.(All things I didn't have issues with before Friday)

However much I search about MND it's really hard to find any data so I'm here asking for all your stories related to MND: progression, milestones, when, what happened for you? What did it feel like, how do I know when something is real or in my head. Do I keep on with my life or plan for the end? How fast will that come? What are the signs?

Anything you can share will help!

Also here to share to anyone that has a recent diagnosis that I've been blissfully ignorant about this with no day to day observable function loss for almost 8 years. So there is hope!

Thank you!

 

[TLARRI1]

Hello, I’m sorry to hear about your condition. My wife was diagnosed with ALS, December 4th, 2024. She started having symptoms at the middle of 2023. Her right hand became very weak, it moved to her left hand. Her arms are still pretty strong, but now her legs are really weak. She can no longer walk, feed herself, bathe herself, or clean herself on the toilet. Her speech is becoming weaker now. I’m her primary caregiver, and on top of everything else, I have to have knee replacement surgery on March 11. I’m on short term disability right now until I recover from surgery. If you need to ever reach out and talk to someone, feel free to call me. We live on the Eastcoast, near Myrtle Beach SC. If you’re interested I will give you my cell number?

 

[fo mnd slow pro]

Thank you so much for sharing!
I'm really sorry to hear what you're going through, and you have all the best from my wife and me.
I'm looking for people sharing their experiences of how the symptoms actually feel to help with anxiety and give some semblance of control. How obvious might they be, what was the first onset.
Ty for offering to be there for a call, I'd rather do it in this forum since I don't have the energy to focus on the topic for a long time.
Distraction has been the key, thinking about today, taking it slow.

Ty again!

 

[Nikki J]

You were diagnosed by emg? Did the emg show issues beyond the shoulder/arm? I wonder if this is a variant of Hiroyama’s. That is usually in the hand but after onset it stabilizes for many years which sounds like you.

You ask about how do you know if something is real or in your head? Mostly time. When I was first diagnosed I thought I had progression beyond the initial area. I did not. It was in fact in my head and I am not generally anxious. It only happened at the beginning.

I am really sorry the doctor left you hanging. If you can get your notes it might be clearer what the issue is. I have great hope for you that you do not have ALS but a type of hiroyama disease

 

[TLARRI1]

I totally understand and I respect that. Fortunately, my wife doesn’t have any pain associated with this disease. But it’s the mental anguish that we both are suffering from. We both are so thankful for our faith, family, and friends, to help us get through this difficult time. My wife is currently going to the ALS Clinic, every three months. She has physical therapy once a week, and speech therapy once a week. We’re currently trying to get the Eye Gaze Technology, for if and what she loses her voice. We try to stay positive and sometimes we laugh and sometimes we cry. We will be praying for you guys. May God, give y’all the peace that passes all understanding.

 

[lgelb]

TLARR, please keep religion in the Religion subforum here: Religion

Slow pro, no need to hang out the crepe just yet. "Focal" means limited to a specific area (ALS is generally all over by the end) and so your prognosis as Nikki mentioned may be way better than what TLARR has described, or most people here.

Are you of Asian descent at all? If you could post the EMG we could be more helpful.

 

[TLARRI1]

I’m sorry, I thought this was based on “Caring for People Forum”.

 

[fo mnd slow pro]

Ty Nikki and lgelb,

I didn't have the needle test, only the surface shock test. Not sure if that would show anything.
I'm not of Asian descent, though my neurologist did send to get another MRI to see if it's Hirayama.
I sadly do not have access to my EMG results.
I also have had very clear sensory symptoms, in the form of burning and numbness associated with the atrophy (in my left arm). This what actually made me press the follow-up with my first neurologist, tingling in my toes, burning and numbness in my right arm (thinking my atrophy is going to spread there).

@Nikki J , you said it didn't spread for you, how long have you been having it? How's your arm functionality?

Ty!

 

[Nikki J]

If your neurologist said it was mnd and didn’t do an emg ( the emg is needles the shocks are ncs) you need another neurologist.

You can see diagnosis date under people’s name. I just passed 11 years from first symptom. It has certainly spread in that time but remained in my initial leg for over 3 years. I can use my arms but my dominant arm is quite weak.

 

[fo mnd slow pro]

Ty!

From what I gather he's the ASL expert in Montreal. I doubt he did an EMG on my legs, maybe I just don't remember.
Anywho, looked back through pics and noticed that my calf changes were there about 2 years ago. I can't say I have actual weakness in it, it's still very strong, weaker than my right calf though.
I've also exercised my legs in the last week to see if it grows and have been having on and off fasciculations on both right and left calfes.
I also seem to get fasciculations on my Vastus Medialis when under strain.

I don't know what's normal anymore, everything is a sign now ))

 

[Nikki J]

So you did have an emg on your affected arm at least? They used needles?

 

[fo mnd slow pro]

Yes, that for sure, and on my right arm as well.

 

[Nikki J]

Oh ok. I misunderstood when you said you didn’t have the needle test

 

[fo mnd slow pro]

Yeah so I had multiple EMGs done on my arms, only ncs on my legs, as far as I can remember.
On my calf I noticed a bulge, read online that is compensatory mechanism for when some neurons die and the rest try to take over.

 

[ShiftKicker]

Hiya, it wasn't quite clear from your posts, as you've contradicted yourself about the EMG. I think the folk here are trying to figure out what kind of information you might need based on what the electrodiagnostic testing indicates. You do have the right to ask your family doctor or neurologist for the specialist report and test results- you just need to call them and make a request. It might help folk here provide more specific info and assistance.