Pending diagnosis

[Cristin P]

Hello,
My husband is 39 and was told yesterday by the neurologist after his EMG that he has a motor neuron disease but doesn't know which one yet. The neurologist told my husband that the disease could stop with just the weakness he's experiencing only in his left hand, or could get worse, he didn't know. He referred my husband for a second opinion.

My question is, everything I've read about MND shows that it always progresses. Why would this neurologist tell my husband it might not get worse, and not give a full ALS diagnosis? We read the doc's notes and he indicated his suspicions that it is ALS.

More about us: I am 37 years old, we have a 5 year old daughter and I'm 7 weeks pregnant. This is incredibly hard on us right now. I'm wondering if the doc was trying to give us some false hope or something.

Has anyone heard of MND "not progressing?"

 

[Atsugi]

Hi, Cristin. Sorry to read about your DH's possible MND dx.


There are different kinds of MND. ALS is only one kind. Other kinds are not fatal. Some don't progress so much.


Sounds like the doc wants to be sure before making a firm dx. That's prudent.


Also, we would really advise getting a second opinion for something so important. Once your doc has settled on a dx, ask him to point your toward a specialist in that disease, so you can a second opinion. This is commonly done, and your doc would expect you to ask.

 

[lgelb]

Cristin,

Very sorry to hear about your husband. There is one neurological condition called Hirayama's disease, affecting a single hand/forearm in young predominantly Asian males, that progresses slowly, can plateau, and can be slowed with a cervical collar. There are similar syndromes under the heading of "monomelic amyotrophy." Did he have an MRI as part of diagnosis?

As for more common MNDs, as Atsugi mentioned, though ALS is the most common, there are others that are slower.

In re the second opinion, there are several good options in San Diego, of course, but let us know if you need suggestions.

Best,
Laurie

 

[Kristina1]

Hi Cristin, sorry you find yourself here. I was also given an unspecified MND diagnosis after my EMG and referred to the ALS Clinic for final assessment/diagnosis, and there I was diagnosed ALS. I hope in your husband's case they find something else though. This is a great place for support. Let us know how it goes.

 

[Cherise77]

So sorry that you and your Husband are going through this. The diagnosis process is so hard on everyone involved.

My Dad was diagnosed on July 11th this year after two months of 3 EMG’s, a MRI, countless blood tests and seeing 3 neurologist. One who specializes in MMN which is multi focal motor neuropathy. My Dad unfortunately didn’t have this but possibly your husband does.
Weakness in just one hand was what my Dad initially had also.

I hope you find some answers soon. Definitely get a second opinion whatever the diagnosis is.

 

[Cristin P]

Thank you all for replies.

Igelb, he did have an MRI which found a slight disc bulge in the cervical area but it was determined that was normal or not the cause of the weakness. All the other blood tests were normal, including creatine.

He has a breathing test scheduled for Tuesday, I guess for baseline purposes?

I have already looked up the UCSD ALS clinic so we will be visiting them for sure, once we get the second neurologist opinion at Kaiser (where we have gone so far).

 

[KarenNWendyn]

I second what Mike said, “Sounds like the doc wants to be sure before making a firm dx”.

Sometimes doctors will use a less specific term, in this case unspecified motor neuron disorder, until they become more certain of the exact diagnosis. It’s important to realize that ALS is progressive and evolves over time. I think of the analogy of those old Polaroid cameras where the picture would develop before your eyes. Initially you could sort of make out the picture, but it became more obvious once it fully developed.

My neurologist initially diagnosed me with a motor neuron disease which was his way of saying he suspected ALS, but he wanted to run a few other tests and watch me over time for disease progression before he confirmed it was ALS.

 

[KimT]

Cristin,

I just want to say I'm sorry that you have found yourself here and I can only imagine the stress you're dealing with. In some cases, the diagnostic timeline is long. I got shuffled around a lot for nearly a year only because I was so strong.

Feel free to ask questions. We are here to help.