MND - ALS or Another Type?

[Superman89]

Hello all,

This may be a welcome break from the typical hypochondriac's posts on this part of the forum (and no offense to others posting, just trying to make light of my situation.) I come to you guys under incredibly sad circumstances. My dad (age 67) who I am very close with, was recently told by a doctor that he has a motor neuron disease. He has been feeling a progression of most of the classic symptoms of MNDs/ALS for at least over half a year, and perhaps longer than I even know.

Now that I know he has a motor neuron disease, I guess the most relevant questions left are which type is most likely, and how to best handle being in this situation. As I understand it, there are a few different kinds of MNDs, none more common than ALS. Obviously I'm hoping whatever he has is something with a better prognosis, but I'm trying to be realistic. He's got more doctor's visits lined up for the future, so all should be revealed in time. But I'm trying to prepare myself best and wrap my head around the situation.

As I understand it, the symptoms he does have are muscle weakness, muscle atrophy, fasciculations, muscle cramps, reduced breathing power, affected walking gait, and a softened voice. The one thing he doesn't seem to have is hyperreflexia. As I understand it, his reflexes if anything seemed a little under reactive. All the other major symptoms do seem to be there, and the doctor believed based on the testing they put him through that this was indeed a type of motor neuron disease.

Does the lack of hyperreflexia point to some other kind of MND? I've read that MMN is an MND that tends to have a lot of overlap with ALS but lacks hyperreflexia. However I've seen some sources claim that breathing being effected by MMN is rather uncommon and usually points more towards ALS, and this is a symptom that my dad does seem to have. Or maybe there are other MNDs that I don't know much about? I'm not sure what to think - I'm hoping for the best but preparing for the worst. It is absolutely heartbreaking.

Anyways, thanks in advance for replies. This is a tough time. Best

 

[Nikki J]

Hi. Welcome and sorry about your dad. Is he in the US? If he is elsewhere the term MND is used differently than here in some places. If he is in Boston like you I hope he is being seen at one of the ALS clinics- MGH is where I go and recommend. In the US there are various diseases under the MND umbrella. MMN is certainly the MND we all wish we had but I do agree it sounds like something else with the respiratory issues. If they do think it is MMN they should be moving fast to try IVIG

What tests has he had? EMG, MRI and a boatload of labwork would be standard pulmonary tests if his breathing is bad. If he has had all of these and has seen a neuromuscular doctor usually there is a more definite diagnosis ( not always). It sounds like he has a lot of LMN findings which would make me guess ( only a guess)it is ALS or PMA If he is lower motor neuron dominant that would explain the refexes

 

[Superman89]

Hi. Welcome and sorry about your dad. Is he in the US? If he is elsewhere the term MND is used differently than here in some places. If he is in Boston like you I hope he is being seen at one of the ALS clinics- MGH is where I go and recommend. In the US there are various diseases under the MND umbrella. MMN is certainly the MND we all wish we had but I do agree it sounds like something else with the respiratory issues. If they do think it is MMN they should be moving fast to try IVIG

What tests has he had? EMG, MRI and a boatload of labwork would be standard pulmonary tests if his breathing is bad. If he has had all of these and has seen a neuromuscular doctor usually there is a more definite diagnosis ( not always). It sounds like he has a lot of LMN findings which would make me guess ( only a guess)it is ALS or PMA If he is lower motor neuron dominant that would explain the refexes

Thank you and yes, he's in Boston same as me. It is a pretty good city to be in if you have any medical problems, although before this my dad was actually quite strong and healthy. It's frustrating how little can be done with most of these MNDs. I've just looked up PMA, and it does seem like a likely variant of MND that he could have. There seems to be much more in the way of LMN involvement than upper. Unfortunately it seems that the prognosis is only slightly better than full on ALS. I know he's had the MRI, EMG, muscle biopsy tests, and maybe others. I think he's seeing a neurologist sometime next week for more testing. He's taken the diagnosis on with quite an impressive attitude, he's actually at work right now. But me, I'm just so very sad.

 

[Nikki J]

I am really sorry. Find out who he is seeing. It should be a neuromuscular doc, preferably MGH, not a general neurologist. I can recommend if you need help,finding or figuring out