Possible ALS diagnosis 4 hours ago

[WifeofKev]

My husband just told me tonight that his doctor believes he may have ALS. He just turned 50.

I'm terrified. I don't know what to do. I'm somewhere between calling my lawyer and making arrangements, determining that he will be the first person in history to survive an ALS diagnosis, feeling like I'm in a TV show and this isn't really happening, and freaking out and throwing ever dish in the cupboard against a wall.

What do I do? What should I be doing now? How do I prepare for this?

 

[lgelb]

The first thing to do is to ascertain whether this is a definitive diagnosis. Even if this is a clinical diagnosis (which "may have" doesn't sound like), we always advise a second opinion.

A diagnosis is made by a neurologist, after a clinical exam, EMG (nerve/muscle testing), lab work, and often imaging to exclude other conditions that are more common. Then a second opinion from an unaffiliated neurologist at a major neuromuscular center, if that was not the site of the initial diagnosis, is needed to confirm the initial diagnosis.

So if this statement was made by a primary care doc, it is very early days. He will want to ask for a referral to a neurologist.

If it was made by a neurologist, if not at a major center, he will want a second opinion.

If you would like to post his EMG report, without his name, and/or tell us more about his losses of abilities, we could be more helpful.

Best,
Laurie

 

[EricInLA]

Laurie says it just right. If this "maybe" diagnosis is not from a neuromuscular specialist, you have to take it with a big grain of salt. A doctor merely seeing symptoms of ALS, without an EMG test, is very far from a true diagnosis of this disease because it can be so many other things. The typical sequence is to go from your doctor, then to a neurologist, and then if necessary, to a neuromuscular specialist (i.e. one who specializes in motor neuron and similar diseases)

But I know how freaked out you must have been when you heard those three letters. I totally get that. Try to bring the anxiety level down a notch if you can. I know it's easier said than done, but try to do whatever works for you to relax and not let yourself go to the worst case scenario. If you have to go there eventually (though most people on this subforum DO NOT have to go there eventually), you will have plenty of time to deal with the types of things you mention.

 

[KimT]

We're here for you throughout the diagnosis process. Praying that it's something else.

 

[WifeofKev]

The diagnosis was after an EMG from a neurologist. It's particularly difficult because I couldn't be there for the testing or for him to get the news due to COVID and family members not being allowed to accompany patients. So he got the news alone.

I spoke with the neurologist afterwards via phone, and he said, given what he saw from MRI, the pulmonologist's report after lung testing, and the EMG he did in his office, he gives it a 75% chance that it's ALS. He's referred us to a major ALS center at a local research hospital and we have a video-conference tomorrow.

I'm somewhere between "it's not ALS, they'll find something else," and "of course it's ALS because 2020."

I'm a "run toward the fire" kinda person; he's a "run away from the fire" type. So he's gone into denial, I'm in full grief and fear mode, probably over-compensating for his denial state. His method of dealing with the possibility is to carry on and deal with things as they come, my method is to hope for the best, prepare for the worst and do that preparation (probably overpreparing) abundantly and early.

So, I guess my question is: If it is the worst, what can I do now that I'll be thankful later that I did it before the real overwhelming stress of a definitive worst-case diagnosis comes and I've got no bandwidth? What phone calls can I make? What preparations can I do now to save time and stress later on?

What battles do I want to start now (for example, with his union about early pension) so I have headway on them if this goes the way I most fear it will.

 

[lgelb]

75% is far from done and dusted. Again, if you want to post the EMG and pulmonology report, we could say more. Before the videoconference tomorrow, you might want to read this sticky to help formulate your questions, the most important being what other possibilities are still on the table and how they will be ruled out.

Given the "75%," I wouldn't get into any discussions with a union or anyone else just yet.

 

[affected]

How awful that you couldn't be here with your husband.
Please do post the EMG results, as they can be given to you electronically there is no reason you shouldn't have access to them. They will really put so much into perspective.