I am now a PALS

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DVJ2

New member
Joined
Oct 20, 2021
Messages
9
Reason
PALS
Diagnosis
10/2021
Country
US
State
VT
Hello...My name is Dan. I am a 48 almost 49yr old husband and Dad of 3 amazing kids. I live in Vermont.

I received an initial diagnosis of ALS yesterday after an EMG. It showed "widepread denervation in multiple muscles in all extremities, left arm most affected, with motor unit changes in some of those muscles. Conduction times are normal." I realize its not officially ALS until a 2nd diagnosis so I hope my post here isn't premature. If so, I apologize.

I am working on getting a 2nd opinion but looking at significant wait times. Hoping a a few pulled strings get me in earlier.

In hindsight my symptoms started with weakness in my left arm over a 18mos ago. Didn't think much of it. An old shoulder injury cropped up a year or so ago and that lead to muscle twitches starting in my left shoulder/back, bicep and forearm starting around March/April. The twitches spread pretty rapidly all over my body except in hands, neck, face. I also developed tight hamstrings that cramped if I kneeled and a left calf muscle that was weak resulting in drop foot. The drop foot comes and goes depending on my stretching of my legs. Recently, I've had them in my hand, neck and forehead. Strength, feeling and coordination in my right arm and leg appear stable despite twitching.

I've been crying non-stop for more than 24hrs terrified of my future, the pain of my family and the unknown future. I have no idea how I will tell my kids other than just tell them. They are old enough to understand, but 12yr old...well he's a 12 yr old.

I don't really know what else to share. I have my EMG results if anyone's an expert at analyzing how far along I am. I hope to learn more about what to expect, how to help my family and learn more about key markers in progression of this shitty prognosis and find kindred spirits in this small, unique community.

Thank you everyone....be well.
 
Hi Dan very sorry to hear. I am glad you are seeking a second opinion. Please consider coming to Mass General for it. Tell them you were just diagnosed and need a second opinion. I don’t know the wait times but they did add another doctor recently.

if you want to post your emg with identifying data removed please feel free. It is only a snapshot though and can not predict progression.

you should have genetic testing - all PALS should especially as you are quite young. Also another thing to look at are clinical trials. Especially the Healey platform trial.

you need to time to adjust of course. There is life after diagnosis but organizing a second opinion is important as is genetic testing in case you are one of those with no family history and a mutation there is one that has expanded access to gene therapy and there are trials for some others
 
Real sorry to welcome you Dan.
It's a real shock, so don't feel you need to be at any particular point or stage in figuring things out.
We have some resource documents here, and lots of support.
 
Thank you for your reply. We are working on getting into Mass General right now with a Dr. Cudkowicz. I have no family history so I appreciate the genetic testing recommendation.

i will edit the report so it can be posted.
 
Dr Cudkowicz is wonderful but may be hard to get an appointment. There are other truly outstanding doctors on the clinic staff. I will send you a pm look for a notification at the top right
 
Welcome, Dan, while sorry you are here. Just a reminder that whenever you tell the kids you will want their teachers and principal to be aware. Of course, I'm sure you're waiting until the MGH verdict is in. Kids will step up when you least expect it, but there is counseling if you/they need it.

As Nikki says, there is still a life from here and we will do everything we can to help you live it.

Best,
Laurie
 
Thank you everyone. Attached are my results. I don't know how to make sense of them yet and was too in shock at the time to ask for details. The fog is a bit less 48hrs later. Time to pull up my boot straps.
 

Attachments

  • EMG Results 1.pdf
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  • EMG Results 2.pdf
    854.7 KB · Views: 311
Thank you for your message. I appreciate the information and names at Mass General
 
This EMG isn't exactly a slam dunk for ALS per se. I suspect MGH will do their own.

Hope for the best, prepare for the worst. Enjoy your family.
 
Have you had other tests? Mris? Blood work beyond the usual blood count and chemistries? If not I would discuss with your current neuro. If some of that can be done now it could help make your appointment at mgh more productive
it is extremely likely they will want their own emg. They often do anyway however good quality mris can be looked at as needed
 
I had a brain and neck MRI. Both normal.

My first neurologist said he's seen normal MRIs with EMGs that show denervation.

More bloodwork and another EMG will be done with 2nd opinion.

@lgelb what about my EMG doesn't make it a slam dunk?
 
The mris are to look for other things not for ALS.
 
Dan, I'm very sorry to hear about your diagnosis, and hope that a second opinion reverses it. Telling the family is the hardest part. We're here for you.
 
Dan, I am so very sorry you are here, but the members of this group were our lifeline when my 47 year old husband was diagnosed with ALS almost 13 years ago. Much like you, he experienced weakness in his left arm for quite a while prior to diagnosis ~ several years. It ws attributed to a shoulder injury, too. After numerous tests, MRIs, orthopedic doctors and neurologists; an EMG showed denervation, and we were sent to the regional ALS expert. Hearing the diagnosis was shattering, but working up the courage to tell our children was by far the hardest part of the journey. We opted to tell them individually as their personalities and expected reactions are so different. Our youngest (son) had just turned 15. To our suprise, the resilience and strength the children showed was incredible. We did have our children talk to a counselor shortly after we told them to confirm that they were emotionally handling this devastating news. Having the negative results from DNA testing reassured them. My thoughts are with you and your wife. My prayers are that the 2nd opinion releases you from this diagnosis. As Igelb shared ~ hope for the best but plan for the worst knowing that we are all here to support you if needed.
 
Dan, I too am sorry that you've received this diagnosis. I received the same diagnosis about 21 months ago, at the age of 49 (and coincidentally am also the father of 3 amazing kids). A couple of months after my diagnosis, the Coronavirus descended on us all and everyone was musing about how terrible the year 2020 was and all I could think was "you have no friggin idea!". Anyway I want you to know that the shock of hearing this diagnosis does wear off, and you WILL be able to resume your life, though you'll perhaps look at things with a different perspective. But the intense sadness and desperation and thoughts of helplessness will subside and you will start to think again about the things that bring joy to your life. It takes some time but it does happen.

Similar to what others have said above, the hardest part for me and my wife was breaking this news to our 3 boys, who at the time were ages 19, 17, and 13. We told them the day we received the news, because just the thought of having to have those conversations was killing me inside. I wanted to get that over. They each processed it differently, but ultimately they handled it with maturity that I didn't fully expect.

I am a 'slow progressor', and it took over 1.5 years for the doctors to diagnose me. I am still mostly functional and I hope you will be too for a long while still. BTW this forum is an excellent place to commiserate and to get very useful information.
 
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