My husband is recently diagnosed--seconding opinion from Columbia Hospital confirming ALS

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Janders

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He is 72 and seemingly in good health (ran marathons, biked daily) until 20 months ago when he unexpectedly had bypass surgery after failing a stress test. He never quite recovered from the surgery...just continued to get weaker. We attributed to the surgery and COVID with gyms closed. When he fell 3 times in November and couldn't get up, we became quite concerned and he has been through dozens of tests including 3 EKGs, bone scans, MRIs and blood work. Dr. thinks stress of surgery advanced the disease. He's having a very hard time accepting the diagnosis and keeps going down rabbit holes looking for other explanations. Is this typically part of the journey? How do I best support him in the denial/anger stage? Also, he seems to respond well to PT -- is this normal? Thank you.
 

jonico

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Hi Janders,

So sorry you and your husband have this going on! In July of 2014 my wife noticed something wasn't right with her left hand/arm. We thought - pulled muscle or any number of things. Fast forward... In late December of that year she was officially diagnosed by Dr. Mitsumoto at Columbia U. It was ALS, but we fought it, endlessly searching the internet, hoping it was anything but that...Lyme Disease, Multifocal Motor Neuron Disease, etc. The truth is that we lost some valuable 'Us-Time' by going down the rabbit hole.

I imagine there are some other possibilities for your husband's diagnosis (sure hope so!) and I certainly don't want to deter you from considering them. But I would also encourage you to really, really start to consciously focus on living the fullest life you can together at this very moment. Every minute, every memory is precious and fleeting. I'd encourage you to focus on the beauty of Now while you fight the reality of what ALS is and eventually will be.

Thinking of you both tonight. All the best...Jon
 

KimT

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Hi Janders,

Did he get diagnosed by a neuromuscular doctor and also get a second opinion by a neuromuscular specialist?
I'm so sorry to welcome you here but this is a very good place for support and for answers to questions.

It took me a long time to get diagnosed but my local pain management neurologist whom I saw for a car accident and migraines picked it up. I didn't know anything was going on but he saw some clinical signs and sent me to Mayo. I put that off for six months, then finally went to Mayo. They had me come back three more times before I got a diagnosis. I got a second at Johns Hopkins and two more after that.

Some days I still search for "something else."

I'm so sorry. I've been in and out of denial for five years. I guess it's a coping mechanism. This year I progressed more than I have for the last four years. I think the stress of Covid and the fact that one of my neuros thought I had an autoimmune disease in addition to ALS just got to me.

I've seen many reactions to this disease. Mine changes with the wind.
 

lgelb

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A second opinion from Columbia sounds fairly definitive. I am sorry.

Yes, some PALS go through a prolonged "it can't be" stage. Some never quite get out, as Kim notes. You can let him know that you know it's a very scary diagnosis and you are there for whatever he needs, whenever he needs it. The second opinion is often more powerful than the first, since the first leaves more room for hope. So you can read up, think through, and be prepared to share bite-sized information nuggets, questions, thoughts and plans when he is more receptive.

If by "responding to PT," you mean that he feels better and moves better in a superficial way, that would not be unusual. If you mean that he is regaining significant functionality that he had lost, that would argue against ALS.

Best,
Laurie
 

Janders

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Thanks so much. I appreciate your experience and helpful!
 

Janders

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Helpful to consider. Thank you and best wishes to you. A nurse I know explained we don't go through the stages of grief in sequence and that was helpful too.
 
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