Probable MND (als) they say

[ThroughThatValley]

Howdy.
So the neurologist said. After muscle twitching for months I was referred to an EMG specialist. After he performed his thing on me the resulting diagnosis was, as in the title "probable mnd, probable als".
I'm a 43 yo male, with two little kids (2 daughters), and I have to say this is taking a huge toll on my spirits right now.
I feel bounced around with fear, stress. My appetite has gone to the drainer, as such has my sleep. Worst thing I'm going through right now are these quite still hours of the night where I lie there, eyes open, and feeling these devilish fasciculation running right and left. It's like a constant reminder a my probable fate.
I'm going a little hard on the drinking side at the moment, as I feel this is the very last thing that would aleviate some of my stress. But I have to monitor this intake as to not going too far.
Any tips on how to pull out of this without losing it. I sometimes contemplate just grabing my pistol and end it, but I can't because of my family.
Looks like i just dropped a bottle in the sea, hoping for some guidance here.

 

[adrivtham]

I am so sorry ... I am just sending you hugs and prayers. Just try to enjoy as much as you can your family.
What I would recommend you is to start taking measures on your finances and home modifications because this will give you a peace of mind.
There are medications (massitinib, edaravone, lunasin) that can slow the progression... and it seems to me that in Europe seems to be easier to get access to it.

 

[ThroughThatValley]

Thank you for your reply. I take good note of your advices. I'm still waiting for a "we're sorry you have als" instead of "probable als" before I put things to motion.
The waiting game will be a tough one. I've worked with cancer patients, and they all told me "waiting is dying Inside". I think I have a full grasp now of why patients are called... well, "patients".
The loneliness in this process is huge. Family stands by your side, but they really can't comprehend fully what you're going through.

 

[Nikki J]

I am very sorry. I trust you are pursuing a second opinion?

Were you told maybe ALS? Or given the clinical diagnosis " probable ALS" which means you have EMG findings consistent with ALS in Two different body regions ( legs, arms, bulbar) along with exam findings of upper motor neuron disease.

Even if it is the latter, hard as it is to believe at the moment, you have much life ahead and as a newly diagnosed person there are things on the horizon that should help and more discoveries every day.

The initial shock is immense and everything you feel is natural. It will get easier.
Sorry again that you find yourself here

 

[ThroughThatValley]

Thank you Nikki for answering back.
Having word from othes who most likely went through the hellish initial shock makes one feel less isolated.
To be precise, I was told "probable" because the EMG guy picked some 'abnormalities' that are/could be consistent with a MND of some sort, most likely als. I don't have the EMG log, because as dizzied as I was I forgot to ask for a copy of it. He sent all that good stuff to La Pitié Salpétrière hospital (which is a I believe a french equivalent of your US Mayo Clinic, with a heavy specialisation regarding neurological affections). I'll be running a set of more thorough tests there (prbly a new mri, bloodworks, another EMG and all that jazz). I just need an appointment with the referent neurologist there, but the medical board seems overloaded right now and it will take some time to get there.

I reckon this will be the 'second opinion' after all.

 

[Manhattanite]

Hello so sorry that you find yourself in this position. As others have said, the emotional turmoil you are experiencing is normal and the shock is tremendous, but based on all the accounts on this forum, something prevails in the human spirit and life continues even with this awful diagnosis.

The best way I have come to deal with this as a caregiver is to realize that I cannot change the reality of what is happening but I do have the power to control how I react.

At least joining this forum is a good first step in taking care of yourself. You will find that the collective wisdom here surpasses that of any medical institution!