Just newly dx with MMN.. I know this neurological discase is very rare but would love to find others with it to chat with...

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number and caring fellow members here, you will see we are supportive and relaxing place. Our shoulders are here for support in many ways. Check into the following forum there are number of friends to assist you:

http://neurotalk.psychcentral.com/forum19.html

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Welcome to NT!
Lots of great support here! Just holler if you need a hand navigating around the forums. You might try using the 'search' feature here to pin down posts with this condition.
I hope you can get some answers soon!

It's great to have you!

Rae

I, too, was just diagnosed with MMN (back in December, 2011). I have all the classic symptoms, drop foot and wrist, profound weakness in my right leg and arm, overall tiredness.
I started on IVIG treatments at the end of December. They started me with a double dose over a three day period, then started infusions every two weeks for the next three months. I go back to the doctors for an evaluation after that.
My insurance company initially said I needed no authorization, but then changed the insurance code (!!!) and refused to pay! I've been screwing around with them since early January, and it looks like I've won most of that battle. Luckily, the infusion company has been great, but so far I'm on the hook for around $90,000!!!
So far, I seem to be holding my own, except for I'm always tired and have very little stamina. From what I can see, this is pretty normal when on IVIG.
I'm hopeful that the IVIG will give me some of mobility back, anything would be great!

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number and caring fellow members here, you will see we are supportive and relaxing place. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Thanks for the response! My lovely wife found this website. We've been going somewhat crazy with every twitch and weakness. Its great to see so many diverse problems and realizing we aren't alone and that I can get better.MMN is such a rare disease, we've only had each other to talk to. None of the neurologists in our town (Toledo, OH) talked about MMN. We ended up at U of Michigan with Dr.Jim Teener (thank God). He was able to come to this diagnosis with exactly the same test results.

I'm new to any type of diseases (I've been blessed most of my life) and am having a hard time finding my limits. It seems like by the time I start to feel any fatigue, I'm already too far gone and am ehausted for the net few days.
I just started my IVIG treatments at the end of December, so I can't really say if it is doing anything for me yet.

Anyways, thanks again for the kind words.

Scott

Just wanting to send you a 'WELCOME'!
This is such a great place for support and understanding.
Hat's off to your wife for finding us!
I wish I knew more about MMN so that I could offer some feedback. Hopefully you are finding your way around the forums and meeting others who are familiar with this. Try using the 'search' feature in the bar toward the top of the screen. It can help you find posts on certain subjects.

I sure hope your IVIG treatments will help.
It's great to have you!

Caring,
Rae

Hi!
I'm new to this forum and to most Internet postings! I was diagnosed with MMN back in Dec. I have had 5 IVIG treatments so far but things seem to be progressing instead of getting better. Does anyone know if this is normal? I am also exhausted all the time, and have a hard time walking more than 75 feet.

Me too! What a weird disease! I've been on IVIG since the end of Dec., but it still seems to be progressing. How about you? I'm extremely tired all the time, no matter how much I rest. I don't know if this is a normal response to IVIG or not. Any thoughts?

Scott

Hi. I was diagnosed with MMN in 2017. I too would like to chat with others with this disease. It can be difficult living with a condition that most doctors don’t really understand. I’ve been receiving IVIG treatments for almost two years.