ALS vs MMN w/ conduction blocks?

[weezie419]

Hi Guys,

My mom was diagnosed with ALS on March 5th. Over the past year she has experienced increasing weakness in her arms, along with some trigger finger-like symptoms in her hands. She also had several uti's/urinary problems.

After this initial diagnosis, she decided she wanted more info on any drug trials running in Syracuse. When she went there for her initial checkup this past week, the Dr told her she might have MMN with conduction blocks. He said her reflexes were almost absent, and he expected them to be hyper with her diagnosis, and he was also surprised that she didn't have any bulbar involvement.

Does anyone know anything about the differences in these two diseases? They've scheduled my mother for a second EMG in a few weeks, but until then we're in limbo land. The big thing is that MMN is treatable, but we don't want to get our hopes up. The first neuro we went to told us he was 99% certain she had ALS.

Any info you guys have would be much appreciated!

Thanks!

[tmasters]

Initially the neuro had hoped I had MMN also. He prescribed a round of IVIg to rule out MMN. If you're not familiar with it, IVIg is an expensive series of intravenous infusions given over a period of sometimes months. If the patient has ALS (my case), IVIg will not help but usually MMN will respond favorably to the treatments. Insurance should cover the cost.

Good luck!

-Tom

[laurel]

Can you get the EMG moved up to an earlier date? If it happens to be MMN, then early treatment with IVIG is indicated. The longer she goes without treatment (if it is treatable) the more damage is done from our experience with CIDP.

[weezie419]

Originally Posted by laurel

Can you get the EMG moved up to an earlier date? If it happens to be MMN, then early treatment with IVIG is indicated. The longer she goes without treatment (if it is treatable) the more damage is done from our experience with CIDP.

It's funny that you mention CIDP, because that's what I thought my mom had before the doctors told us ALS. I asked my mom about getting the test date pushed up, but she thought that the doctor had given her the later date for a reason (what that reason would be is beyond me).

I know this is an aside to this thread, but can you tell me how they decided it was CIPD over ALS?

[laurel]

I think a big decision maker on the diagnosis for my husband was elevated protein in the CSF when he had the lumbar puncture. They waffled around for ages with his diagnosis. Then they did a trial of IVIG and he had good response so that helped them nail the diagnosis. It is interesting though that even after 5 years with the CIDP diagnosis they still say he doesn't totally fit the diagnosis there either. He seemingly has a very rare variant of CIDP and is back for another EMG this week.

[notme]

I guess my question would be is who is the doctor that diagnosed ALS? Is it an ALS specialist? Is the doctor that doesn't agree a specialist in MND?

Absent reflexes isn't abnormal, unfortunately, in LMN issues.

[weezie419]

The Dr who diagnosed the ALS is a neurologist--to my knowledge he does not specialize in ALS. The doctor she saw in Syracuse runs ALS trials. I would think this second guy is more knowledgeable, but I'm not sure.

I asked my mom for more clarification on the reflex thing, and she said she didn't have any when they checked at first--then the doctor told checked them again, telling her to lock her hands together and pull outward. When she did that and he checked her reflexes worked. Does anyone know the significance of that? Unfortunately I wasn't at the visit so I wasn't able to ask questions.