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Neuromuscular In memory of Rose Marie.

Anyone have Multifocal Motor Neuropathy ??

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Unread 07-22-2012, 01:43 PM   #61
nerd
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Default my experiences with mmn

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.
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Unread 07-25-2012, 08:04 PM   #62
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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
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Unread 07-26-2012, 12:08 AM   #63
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Quote:
Originally Posted by Rufus View Post
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.
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Unread 07-26-2012, 12:15 PM   #64
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Unread 07-26-2012, 08:28 PM   #65
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Unread 07-27-2012, 02:11 PM   #66
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Default connections

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.
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Unread 08-09-2012, 06:01 PM   #67
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Default MMN questions

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.
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Unread 01-04-2013, 03:56 PM   #68
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Default Anyone have MMN?

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
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Unread 01-22-2013, 08:46 AM   #69
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Quote:
Originally Posted by jennyd1230 View Post
I just got my diagnosis last week, after 9 months of lots and lots of horrible testing..not sure whether to be glad to finally have one or not, considering what it is and the fact that my neurologist just kept saying how VERY rare it is. I too have lost the use of my hand and have the curling in my fingers (pain & twitching now too), only bad thing is that it's in my right hand and I am right handed..really stinks. Pretty terrified about the IVIG treatments that they say I have to start ASAP!!! They told me that there are NO SIDE EFFECTS. (Could someone please be honest with me? This Doc has lied before.) So as to prevent progression want to start next week...only thing is, my legs have already been affected, they have just put it off to due to arthritis from a car accident about 13 yrs ago. I am also very worried that my husbands insurance co. won't pay..and I haven't been able to work in months..still waiting on Social Security decision, but who knows when that could happen...38 yrs old and feel like I am 150 and thats on a good day. Will this get better?
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.
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Unread 01-23-2013, 06:21 AM   #70
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Default mmn question

Quote:
Originally Posted by tonyporter456@ View Post
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
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