ALS instead of surgery

[bob_s]

I went to the hospital 2 weeks ago for prequel to surgical fusion of herniated cervical discs and was thankful my left-sided weakness wasn't an MND But the neurosurgeon walked me down the hall to a neurologist. I had my first fasciculations during the neuo exam. EMG and nerve conduction tests showed MND. Blood tests ruled out other causes. Hard to wrap my mind around not only not getting better but the negative prognosis.

 

[ottawa girl]

Hi Bob,

I cannot imagine a bigger shock! Most of us experience symptoms, suspect it, and then we find out. We have, at least, the cushion of the time in between to wrap our head around this eventuality.

Take some time now - you need to absorb the news, grieve it, share it with family and friends and then plan for it.

Coming here is a good thing- it was and is for me. Seek a second opinion, if you wish to do so, sooner rather than later.

This forum has camaraderie, reliable information and insightful support all sprinkled with hope and chuckles too.

We are here for you Bob.

 

[bob_s]

I'm taking it one day at a time and trying to focus on what I can do and not what I can't. But that's not easy.

Family have helped make the house safer to navigate for me.

Bob

Hi Bob,

I cannot imagine a bigger shock! Most of us experience symptoms, suspect it, and then we find out. We have, at least, the cushion of the time in between to wrap our head around this eventuality.

Take some time now - you need to absorb the news, grieve it, share it with family and friends and then plan for it.

Coming here is a good thing- it was and is for me. Seek a second opinion, if you wish to do so, sooner rather than later.

This forum has camaraderie, reliable information and insightful support all sprinkled with hope and chuckles too.

We are here for you Bob.

 

[cervus]

So sorry, Bob. What a shock it must have been. You are already on the right path as far as making changes in the home.
Once you get through the initial emotions, try to make the most of each moment with family and friends. Thinking of you. Yasmin.

 

[Miss]

Bob, I am so sorry. My husband was looking at surgery for what they thought was a brachial plexus injury. Although he wasn't in the hospital for the surgery when he found out it was ALS instead, I understand how shocking it was for you. My thoughts and prayers are with you.

 

[rose]

Bob,

Hard way to find out, I agree. We're here for you. There's loads of helpful information on the forum too.

 

[Ms. Pie]

I know the feeling well. The initial shock will subside and I hope you will realize that there is still life to live, things you can do, people that you love and that love you. Learn as much as you can about how to live with ALS. Ask questions here. I've found the people here and old posts are a wealth of useful information from people with ALS (PALS) and their caregivers (CALS). Welcome to the Forum! Hugs to you!

 

[bob_s]

I feel for you and your husband. Sounds so sadly similar to my experience, and I can sympathize with the shock you both must have felt.

Just to clarify, the surgery prequel involved going to the hospital a few days prior to surgery for blood tests, anesthesia consult, and seeing my neurosurgeon explain the surgical procedure, prep, and post surgical process with a near 100% success rate. It was a very long day even before the neurologist and the ALS diagnosis. And a few days later, instead of surgery, I went for nerve conduction, emg, and a lot of blood tests.


QUOTE=Miss;256793]Bob, I am so sorry. My husband was looking at surgery for what they thought was a brachial plexus injury. Although he wasn't in the hospital for the surgery when he found out it was ALS instead, I understand how shocking it was for you. My thoughts and prayers are with you.[/QUOTE]

 

[bob_s]

Thanks everyone. It is good advice that there is still life to live, but that's hard to focus on. It's still too new. Right now a few good moments, maybe some laughter, let me briefly forget. That seems to work for those moments. Does that make any sense?

Bob

 

[Miss]

It makes total sense.

 

[wandabrittle]

Take one day at a time. That's what we did and have fun in been.

 

[momap53]

So sorry about your diagnosis. Makes perfect sense. Sometimes we need to take it one moment at a time.

 

[lcav281]

Bob...I was just wondering what prompted them to look into MND as opposed to surgery? Were you having other symptoms that made them suspicious before you even had the emg and nerve conductive test?

 

[bob_s]

lcav,

The neurosurgeon was worried because I didn't have any sensory deficits or pain. (Well, I had/have back and knee pain.) So he wanted a "second opinion" to rule out something else going on besides my herniated cervical discs. If he hadn't walked me down to the neurologist, and she hadn't had a cancellation and could fit me in right then, she said she was booked four months ahead. What luck.

Bob

<lcav wrote: Bob...I was just wondering what prompted them to look into MND as opposed to surgery? Were you having other symptoms that made them suspicious before you even had the emg and nerve conductive test?>