HI:
I wwas dx with mmn about 8 years ago...scared my wife. My GP thought it was agressive ALS, and a few months left, but not sure, neuro-specialist sais no, more likely agressive MS maybe a year, but still not sure. 21 vials of blood for tests and a visit to a high level specialist, and she assured my wife this won't kill me.
Had fairly advanced symptom, all 4 limbs weakening, hand clawing....
IVIG helped very much, and I had minimal side effects, at 80gms every 3 weeks. After about 3 years, it became less effective, and went on concurrent Cyclophosphamide monthly (IV) for a year. Very effective after about 3 months, restoring me to about diagnosis date conditions. That stopped about two years ago. Last year I went to 80gms every 2 weeks to reduced rollercoaster effects. The last few weeks I am down a bit and will be doing another 6 months of Cyclo soon.
My Vancouver specialist tells me I'm one of the 3 most debilitated in my province (BC).
I'm male 62.

Hi Nerd,
Welcome to the Forum.
I would be very interested in talking to you, perhaps via email. I was diagnosed in 09 but we now know that symptoms had been showing themselves for years before (unfortunately no one recognized them). At any rate, I'm very curious to know a bit more about you. I, too, am from BC and you are the first person from BC that I have heard that has MMN (I know there must be others but none, to my knowledge, have emerged on any of the various forums). My specialist is also from Vancouver. Do you have Dr. G by any chance?
I'm sorry to hear that things are continuing down. Hopefully the next round of Cyclophosphamide will help. I was on it for 6 months but the only thing it did for me was make me ill and make my eyes hurt. I was on Rituxamib, every 10 weeks, for 1 year and though I don't know for sure if that helped, it did allow me to get back to a gym where I've slowly built up my strength. It's still a struggle to walk or do any fine motor skills (like do up buttons, tie shoes or cut up food) but my ability to walk, using braces, has improved. FYI, I'm male, 59. Anyways, if you'd like to chat off forum, fire me an email.
**. Sorry don't like to use the email address on forums...too much spam already, likely from bots harvesting them.
Cheers,
Keith

I would like to talk off-forum...how do I do private message, as I also don't want e-mail to all.

Hi
private messaging is available after you have made the required number of posts, and can be done either from your User CP or by clicking the User Name top left of each post to get the drop down menu or by clicking "send Message" under the user name on a profile page. Leaving visitor messages on profiles can be seen by others, while the private messaging system is just between you and the other member. You can also select to receive emails by checking that setting in your user CP options

If you click your username to the left of your post this is what will show up.


Rufus
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this is an easy way to contact other members too, by clicking their username at the left of their post to send them a message or see their profile page.

Nerd, could you please see the above post and send me an email as to how to connect with you.
Apologies to the rest of the forum for using this space for a private message.

I just got diagnosed with MMN. Which in my view is a good thing I had been very worried about having ALS due to my symptoms.

I was told I needed 20k infusions regularly and unfortunatly I am in the state of being uninsured and far from rich.

Can anyone point me towards good aid for treatment costs. Has anyone had success with medical or SSI?

please let me know.


TO the previous poster, I was told by my neurologist 80% of people respond with in weeks to the treatment, and often get back a huge amount of strength. I wish you luck. I will be starting mine as soon as I figure out hot I can pay.

hello 'nerd' and 'Rufus' read the dialogue b/w you two, I have almost the same story. I have complained re: left side fatigue since 2007 'my GP said 'you know your'e getting old'. I remember having similar claw like discomfort in the summer of 2011, then in spring of 12 I caught ad 'flu' went to the doctor and asked re: antibiotics plus what we were going to do about my hand (claw!) good thing I saw the new partner (GP) who 'diagnosed ALS symptoms ..... A battery of test EMG plus a visit to a specialist in Vancouver who recommended IVIG treatments, seeing some benefits but having similar muscle weakness. I would love to start an email dialogue but have to have *more* posts before I can send a 'private' message.

Hope you read

I live in BC too

hi,i dont want scare you but i had the treatment in 2007 and the treatment was ok for a while but i started haveing areaction my skin on my feet and hands peeled and cracked ,the treatment stoped and recoverd after months.but i was just one in thousands.

hi ,looking over the net i found a site claiming a wonder supplement that helps with all types of neuropathys,the name is neuropathy treatment group from IDAHO in u s a anyone know anything about this vitimins formula