Positive EMG

[KevinR]

The right leg was negative but he stopped at the right arm. Should I ask for an EMG of my SCM? It’s more atrophied than the right arm and shoulder. I have cared for many ALS patients in my 30 year nursing career. However, by the time they get to me the question answer window has closed and it’s poor nursing to begin asking historical questions as their loved one lies in the bed dying from this disease.

As my dad was famous for saying “you don’t know what you don’t know”. So far it’s been a slow progression as I can still walk ( sort of ), talk, eat and swallow as long as I use my coping strategies. I do understand the difference between bulbar and limb onset but can limb onset change over to bulbar? Or, does it continue to take my dominant side then switch to non dominant?

This has been such a long journey for me. If you just imagine a father saying you have this at 17. I was already on my way to being problem teenager and this sent me over the edge. Through God’s grace and mercy I ended up in the army. Became a registered nurse and have had a wonderful life. I kept my promise that if it was a familial disease I would not have children. Family planning is what they call it now but for me it was I couldn’t give this to anyone else.

I want to thank this site for helping me push my doctors into doing the right thing. I have no doubt that had I not been my own lifeguard I would still just be in holding pattern. I know it’s hard to believe but for the VA it’s all about money to them. But from my experience I never worked in a hospital that didn’t focus on the bottom line.

 

[Nikki J]

Are they giving you the diagnosis and thus your wife will get the benefit you wanted? It looks like they should. If that is the case there is really no reason for another emg. Once we are diagnosed we know it will spread and when it does we don’t get another emg to prove it.

I am sorry you have ALS but we all expected this I think. Sadly it happens to a lot of people with provisional pls as you know. Are they offering ALS meds now?

 

[KimT]

I'm sorry, Kevin. The thing about this is we never know where it will go next or how fast. Each of us can only tell you our story. You know your body.

I will say that I insisted on a SCM EMG at Mayo because I was having a time swallowing pills. It turned out to be real bad GERD. That was in 2018 and I'm still eating. We just never know. They ended up referring me to an ENT. Although she found paralysis in my right vocal cord, I still passed the swallowing test, could speak clearly and had no issues with my tongue.

You should do what makes you feel better.

 

[KevinR]

ALS diagnosis is now in the chart. Yes and no on the meds. Because of my severe constipation I have been having blood in my stool. So GI consult first.

It is a relief to know. And my wife agrees with you about another emg. So much so fast.

There is a part of me that doesn’t want the peg tube, the bipap or the meds. I’m not so scared of dying as I am watching my wife see me going through these changes. We all know this can be traumatic on families. I see in it her face every time I fall, aspirate or am short of breath . I have tried to get her to look at this site for help but she has been resisting. You know how is nurses can be?

 

[Nikki J]

A comment on my experience with family members and feeding tubes. My mother didn’t want one. My sister delayed until it was almost too late. I have a kind of ptsd from watching them struggle and choke with virtually every bite. Meals took an hour or more even though it wasn’t enough nutrition to maintain. My mother was emaciated when she died. My sister was when she finally got her tube.

Although I support any PALS right to choose I needed to share my experience because you said you were worried about your wife watching you suffer. My sister got her tube 9.5 years ago and died 7.5 years ago. My mother has been gone much longer. Just reading what you wrote triggered a flashback. Every time I read about a PALS struggling to eat and not wanting a tube it happens. A tube makes mealtime easy and when / if you are done you can stop using it or use it for meds only

 

[swalker]

Kevin, I am so sorry to hear of your EMG results. While I know that you were aware that things were progressing, it sucks to have it confirmed.

Hopefully, you will continue with relatively slow progression.

Steve