Worried about my husband

[Swj2020]

Hi. My husband is undergoing evaluations for some symptoms that I fear could be ALS. He is 71 yo, and about a year ago, he started having some weakness in his right hand. The weakness has gotten worse and is now in his left hand. He has wrist drop in both hands and fasciculations in the forearms. He has no apparent neurological issues elsewhere in his body, just the hands and arms.

MRI turned up nothing and he had a nerve conduction study today that showed no sensory issues but something that I didn’t understand. He also is having lab tests.

What freaked me out was that his neuromuscular specialist asked him to bring me with him for his next appointment in two weeks.

I am scared out of my wits and I’m looking forward to two weeks of high anxiety. on top of that, I’m also dealing with a mom who has dementia and is refusing to move out of her house and into assisted living.

 

[KarenNWendyn]

The symptoms are concerning, but not necessarily specific to ALS. I’m glad you’re seeing a neuromuscular specialist. What is important when it comes to diagnosing ALS is the big picture: clinical weakness as determined by a physician, characteristic EMG changes in multiple muscle areas, upper motor neuron signs, evidence of disease progression, and ruling out ALS mimics.

I’m assuming an EMG test was done along with the nerve conduction studies. Has the specialist already gone over the results with you, or do you anticipate that to occur at the upcoming appointment? We can take a look at your EMG if you post the results, but if the specialist has not gone over it with you yet, it would be most appropriate for that to happen first.

An EMG can show a variety of conditions other than ALS, or it can be normal. ALS would be among the least likely of concerns to show up on an EMG. At this point, I suggest going to the appointment with an open mind. It’s the doctor’s job to put it all together for you.

Best of luck and keep us posted.

 

[Bestfriends14]

As Karen mentioned, your husband's symptoms do sound concerning, however, not indicative of ALS specifically. Has your husband lost his ability to do certain things? Things like clipping his fingernails, doing up buttons or zippers, opening a door knob, or taking a cap off of a bottle? That could be construed as true weakness. Again, as Karen mentioned, ALS is at the bottom of the list for an EMG abnormality.

 

[Swj2020]

He has difficulty with some tasks, such as fingernail clipping and buttoning the top button of his shirt. He can handle zippers, and seems to handle removing caps off of prescription meds (I asked the pharmacy to put non child proof caps on our meds a long time ago). He was doing some yard work the other day as well.

 

[Bestfriends14]

Please keep us posted and update us on how the next appointment goes.

 

[Swj2020]

Thanks for your support. If the news is truly devastating, I hope I can be strong for him. We’ve had 46 mostly good years together, but I don’t want to lose him.

All of his problems have to do with hand and, to a lesser extent, arm weakness (though he had no trouble hauling a case of wine from the car!). But he can do some things involving manual dexterity but not others such as opening sealed containers. Legs, speech, breathing are ok.

 

[KarenNWendyn]

though he had no trouble hauling a case of wine from the car!).

Gotta make hay while the sun shines!

 

[Swj2020]

How do people cope with facing this disease? I am so depressed now, as is my husband. The lab test orders (eg testing for heavy metals, still pending) stated that the purpose was to assess for ALS.

I plan to see my primary care doctor to ask to be put on antidepressants, and I want to start seeing a psychotherapist. I fear that I may never be happy again, and this profound sadness is so painful.

Sorry to dump.

 

[KarenNWendyn]

If he does end up being diagnosed with ALS, there is no denying it is a tough ride. The following document reviews that and some of the next steps to take: Resource - If you've just been diagnosed - what to do now?

Antidepressants can definitely aid in coping. It sounds like you are also going through some hard times with your mother as well, so you have a lot on your plate.

I suggest taking things one day at a time. He is still going through the diagnosis process, and other explanations remain possible. Secondly, he is not going to all of a sudden become incapacitated over night. So focusing on spending time together doing things you enjoy is time well spent.

 

[Kristina1]

For me it's best to be in the moment, take things a day at a time, as opposed to perseverating on what will happen down the road.

 

[Swj2020]

Well, I went with my husband today to the neuromuscular doctor to find out the results. Two Results were not normal. One was the anti GM1 antibody level, which was sky high, suggestive of motor neuron disease, not ALS. This could be treated with monthly infusions of IV immunoglobulin.

However, creative kinase levels were also elevated, suggestive of ALS. So it’s off to Johns Hopkins for further evaluation.

I‘m a wreck.

 

[Nikki J]

Cpk is non specific but if the anti gm1 antibody panel was sky high ( as opposed to mildly elevated) that is considered very specific. Ivig is not fun but people usually do well on it. I would be doing a happy dance

 

[KarenNWendyn]

High CPK can go along with any number of neuromuscular diseases including myopathies, or be the result of medications, metabolic disorders, trauma, or even be a normal variant for some folks. As Nikki says, it’s nonspecific. I have ALS, and my CPK was normal.

The anti GM1 sometimes goes along with multi focal motor neuropathy which often responds to IVIG and is considered to have a better prognosis than ALS. All is not lost.

 

[lgelb]

MMN is often associated with CPK that is elevated but <3x normal. And the higher the anti-GM1 titer, the better the chances of MMN as Nikki and Karen noted.