Status
Not open for further replies.
Hello JessB

You ask how definitive the EMG is: if in the right hands, it is a very powerful tool that tests the health of nerves as well as their contact with muscles. It can shed a lot of light on problems with the nervous system and muscular system (it is used to diagnose everything from carpal tunnel to muscular dystrophy to ALS and everything in-between). I'm a bit confused as to why your neuro sent your father to a neurosurgeon to get one done, though.

Robert (planningguy) was correct in pointing out that they were looking for multifocal motor neuropathy (MMN) which IS NOT a type of motor neuron disease but rather a type of peripheral neuropathy (a neuropathy is a condition where nerves are directly damaged). MMN is also treatable. There is one distinctive feature of MMN that shows-up on an EMG called conduction block. However, in rare cases conduction block is not picked-up by the EMG. The absence of conduction block is probably why the neurosurgeon doesn't think it's MMN . . . but I would put more trust in an ALS specialist to perform and interpret the EMG. He will definitely be getting another EMG when he goes to his appointment.

I know of many studies that have shown West Nile Virus can infilitrate the central nervous system and damage motor neurons . . . and as a consequence . . . mimic ALS symptoms. Given your father's travels, it is definitely a possibility. Lyme disease is another possibility.

If you can somehow get a hold of his EMG results, I can look at it and give you some further opinions.

Do your best to remain calm, because your father has yet to see the EXPERTS when it comes to ALS. His ALS specialist will pursue every and all other possibilities. He will be ini very good hands.

Take care and lean on us when you feel the need.
 
wright-

thank you so very much. I know he was sent to this neurosurgeon by the neurologists because he specializes in degenerative nerve diseases. Hopefully this ALS specialist can give us some difinitive answers. It's good to know there is still some hope. I will see if I can get his emg results, if I can I will post them as soon as I get them. I can't thank you enough for your help.
 
My reply has two parts,

First of all, to jessB, welcome to our little family my dear. I'm so sorry you had to find us, but you will find a wealth of support and concern here. My prayers are with you and your family.

And to wright-
I had my EMG today, and of course, forgot to bring the results home with me. They are going to fax it all to me on Thursday and I will be putting it on here for you to see. Thanks for all you do,

Never give up,
Never let up,
Never lose faith,
brenda
 
Did he have numbness from pressure on his feet or tight shoes? or would he just be sitting and have that numb feeling in his foot? I dont have ALS but i have lost muscle in my hands and feet and when i am sitting in a chair that is too small and there is extra pressure on my feet, my feet get tingly or when i put my sneakers and socks on the pressure makes my feet tingly sometimes.
 
Samantha-

I'm sorry my information was a bit wrong in my original post, I called my mom and he does not have numbness. For some reason I thought he did and I was wrong.



Also an update on the situation- I talked to my Mom this morning and she admitted that the Neurosurgeon diagnosed him with ALS, it wasn't just that he suspected it. She didn't want to upset me too much, but today she was honest with me. But I guess its good atleast that the ALS specialist is seeing him tomorrow. I am surprised at how fast they are getting him in, but I am very greatful. He is also looking for an extra opinion beyond that, as he has been encouraged to do so by practically everyone.
I think he is looking to seek another opinion from Mayo or the Cleveland Clinic. He is also looking into someone at UPMC since they live right there in Pittsburgh. If anyone has a preferred doctor in the Pittsburgh area, I would love to pass along the recomendation.
 
They are wise to go for second and even third opinions. How is your mom holding up? Do your siblings know yet?

Big hugs and prayers for you!
 
jennibf-

I am almost positive my mom is in total denial and shock. She seems fine which is not like my mom at all, she is usually a very emotional person. They havn't told my siblings yet either, I think they are waiting till they get the confirmation from the second opinion.

Thank you from the bottom of my heart for the support. If a miracle doesn't happen I know I will need to be able to talk to people who understand so I can remain strong for my family.
Eventually I know my mom will break down and I will need to be the strong one in the family. I owe that to my dad. I don't want him to be left with that responsibility considering the circumstances.
Thank you again.
 
Status
Not open for further replies.
Back
Top