I have had MMN for 8 years and have had, still having, IVIG. Have had Ritixumab and Cyclophosphamide . All of these treatments have worked but the improvements have not lasted, and my left arm (where I am affected) is slowly getting weaker and more my fingers are curled and my wrist droops.
I now wonder if there might be another way of treating this problem, diet, natural foods, vitamins etc. At 63 years of age I would like to slow this progression down if possible.
Has anyone gone down this path and if so what progress have you made.

I just spent the last week ay Mayo in MN getting poked and prodded. They concur with the MMN conclusion, though the doc did say they can't be definitive without observing for months or years. He's recommending doubling the IVIg dose I was getting, which I regard as a positive result: My doc at home has no experience with MMN (despite working at the Univ of Utah, not a small population), where the Mayo sees as many MMN cases as anybody else, I believe. My Utah doc was considering plasmaphoresis or cyclophosmamide next, both of which sound pretty scary.

As for how people respond to IVIg, Dr. Jones (Mayo) said you don't generally get reversal of current damage--what is hoped for is to stop the progression of the disease. I could live with that--so far having lost extension of 3 fingers on my left hand, have some weakness, etc. Thankfully I'm right-handed.

It's kind of discouraging to have so many (well, relatively) responders here say that the IVIg didn't help much.

I also had a lessening of fasciculations and cramps with the 5 months of treatment just concluded. Can anybody else share their experience? Maybe this forum is self-limiting to patients still seeking answers, and those who do experience successful results tend to not follow the forum?

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?

My IVIg experience; keto diet?
 

Hi Jennyd1230. I'm sorry it's your dominant hand.

IVIg: the only side effects I've experienced have been some headaches. Having them slow the infusion to 150ml/hr helped a lot. This made for 9-hour sessions at my earlier dose; I brought lots of reading material, and thank goodness for iPads. I did have a night of throwing up after my initial, 3-day course of 2g/kg. On the bright side, after a week I noticed quite a lessening of twitches and cramps, which then came back two weeks later, so we tweaked the treatment schedule to every 3 weeks, one day, 1g/kg. After 5 months that positive effect waned. Then I took 2 months off (waiting for Mayo results) and the Mayo prescription was twice the IVIG monthly, but split into more frequent treatments. Sadly, now I notice no improvement in twitches and cramps, and headaches are more easily triggered--for instance if I have more than 1 glass of wine. However, since I haven't lost the use of any more fingers, I hope the IVIg is helping. I lost my left thumb extension last April, index finger in May, then IVIg started, lost half a pinky in August, and none since then (knock wood).

The Mayo doc told me the IVIg mostly prevents or slows the progression, rather than reversing it, which would still satisfy me, though as a result of the MMN I've now developed tenosynovitis in my left thumb which *does* hurt, and now I'm wearing a splint to try to improve that. Adding injury to insult, as it were.

I had weeks of sleepless nights worrying about the money, till my insurance decided to cover the treatments. It turned out to be a silly technicality that was slowing things up. All I can say is, don't hesitate to jump into the breach if one party or another is dragging their feet. I am sooo thankful that the new health care bill took away annual and lifetime caps on coverage--it definitely affects IVIg!--and sooo worried that the bill's opponents will manage to repeal all or part of it. I'm self-employed and have to buy my own insurance, which is now up to $950/mo. for me and my son, and I have to be able to keep working to keep paying the premiums. I still worry that someday it might come down to a choice between treatment and, say, my family's home. I have 6 years to Medicare. I wonder how Medicare does with IVIg...

I'm now looking into a ketogenic diet to see if that might help, in case the IVIg (or insurance) fails. Are we allowed to post links here? I started with a New York Times article titled "Epilepsy's Big Fat Miracle" (you can google it up) and started googling around based on things I read in the article. Keto diets are a proven, amazing sometimes-even-cure for epilepsy, and research is now being done to see how it might affect Parkinson's, Alzheimer's, and all sorts of stuff. It appears to confer protective effects on the nervous system, and that's just what we need in MMN.

HI all,,have ben diagnosed with MMN DEC 23 2010,,i have had it for about 18 yrs and know one knew what it was, doctors did an ulnar nerve decompression that i didn't need and was told by different doctors that i had, ALS, neurologic amyotrophy (Parsonage-Turner syndrome ), Alcoholic neuropathy , no one had a clew until i went to University Hospital in Syracuse NY. i should be starting IvIg soon if Medicaid will pay for it,,its ben so long now i don't know how well the IvIg will work,,im not going to get back what i lost over the last 18 yrs but it may stop the progression. i hope i can get SSI because i can't get disability because i didn't pay in for so long,,not being able to work a real lot the last 10 yrs has screwed me up..i can hardly walk some times, and when i do hard work it takes me 3 days to get over it. it seems now that both my wrists(right hand atrophy) get hurt every time i do something. i guess it is what it is..

Multifocal Motor Neuropathy with CB
 

Jenny,

Before the IVIG I was unable to use my left hand and had lost much of the right hand. I had lost 60% of the muscle mass on the left arm and 40% on the right. My legs had started to have some problems as well. I run a huge computer lab, could no longer type and wondered how long I would be able to work.

I have now been on IVIG for at least the last (3) three years and have all of my muscle mass back, and hardly any control issues. Over the last year I have lost 76 lbs. with no change in diet or exercise.
Side Effects:
During the first 5 day phase I ended up with severe headaches and had to stop after day 3, I however have had few headaches since then. My biggest side effect is feeling rundown for a couple of days after the treatment.

Life has greatly improved for me.

Going from no or little use of my arms and hands to being able to do everything again is a reversal in my book. Why they don't consider that a reversal however is beyond me.

I still have a ways to go before I reach the max dosage you can have and expect based on my current progress to be ok for the next 10 years.

Not at all bad for someone who has had Multifocal motor neuropathy (MMN) with conduction block for 16 years. You can be glad it only took 9 months for you, it was over 10 years for me and I was told I had everything from Luke Garrett disease to MS. Or perhaps it was all in my mind. If you think that did not ruin my day….

There is hope and it really could be worst. I will add you to our prayers tonight.
Ed

Great resource
 

I really appreciate all of the information. Seems This is such a diverse and enigmatic disorder. No one even seems to try to find causes. I have been trying to get to the bottom of this for over two and a half years. Was misdiagnosed with a disk problem and had back surgery and finally got the CIDP, MMN diagnosis this winter and have just now gotten approval for IVIG from the insurance. Just in the nick of time as I can hardly walk even with a cane. I will let the forum know how thew IVIG treatments work out for me.
Thanks,

PS Insurance finally relented after I had a Spinal Tap with positive protien marker. FYI

my story
 

i found the info here good, lots of different stories help too .
i myself have had Multifocal Motor Neuropathy with conduction block for 11years ,i was diagnosed within a week of seeing a dr about my fingers arching backwards and had not experienced any weakness as of then ,they put me on intragam infusions every 3 months after about a year i had severe weakness and had to leave work (lighting tech/rigger) within another year weakness had progressed and treatment became monthly then 3 weekly and the dose increased ,i am now on maximum for my weight (60gm) and have lasted about a year at this before noticing weakness at end of 2.5 weeks ,i have lost use of individual finger/thumb movement ,wrist movement on both hands ,left arm is useless as is left leg ,i have foot drop in both feet and have to wear orthotics to walk without tripping over .
it has ruined my life ,i used to be active and do physical activities as hobbies and work ,i was diagnosed 6 months after my daughter was born and my Marriage broke down when i had to leave work .
more to come when i can express how it has effected my life without becoming so angry

my story part 2
 

ok calmed down a bit now (lol)
i forgot to mention i did 5 weeks of apheresis then 6 months of cyclophosphamide ,the apheresis made me lose more muscle strength and use than the actual disease the chemo just made me sick for 6 months (which was handy when i was driving an 8hr trip twice every 2 week to see my daughter as my ex didnt want my daughter to see me waste away (thanks for that family court) .
fast forward 3 years of me going from job agency to job agency trying to find new work to not getting one interview. my ex moves to my home town and within a year my kid is now in my custody full time .(YAY)
i am still on intragam and am slowly noticing more weakness due to the fact you become immune to it after time .

my life is ok now but as you can see by my first post i have an anger issue due to not being able to do normal stuff with my kids and be a normal participant in the community .
i hope all the best for all diagnosed with Motor Neuropathy with Conduction Block and will say keep hope,,, stem cell research is our biggest hope (so if you do chemo save stem cells first).

and if any of you have any breakthroughs let us know as DR/PROFFS are just guessing

cheers and all the best
Lee

new MMN forum
 

It's so hard for people with something as rare as MMN to share experiences, *admin edit*

I hope we can benefit from sharing our stories with each other in a dedicated space.

amen!
 

the very best and hopeful outcome i've seen in forever. i'm scheduled to start ivig treatment pretty soon and i pray i can be posting this same exact outcome soon!

thanks

more info pls
 

hi Ed,

how soon did u start to see improvements after the ivig treatment? my symptoms sound exactly like yours and your outcome is very encouraging. also are there different brands of the ivig medicine that perhaps have different levels of efficacy. if s what brand did you get treated with? i also work in a computer lab and one hand typing is getting increasingly problematic. my left hand as it is now is not really functional at all.
any info would really help.

thanks

QUOTE=Edfe;755306]Jenny,

Before the IVIG I was unable to use my left hand and had lost much of the right hand. I had lost 60% of the muscle mass on the left arm and 40% on the right. My legs had started to have some problems as well. I run a huge computer lab, could no longer type and wondered how long I would be able to work.

I have now been on IVIG for at least the last (3) three years and have all of my muscle mass back, and hardly any control issues. Over the last year I have lost 76 lbs. with no change in diet or exercise.
Side Effects:
During the first 5 day phase I ended up with severe headaches and had to stop after day 3, I however have had few headaches since then. My biggest side effect is feeling rundown for a couple of days after the treatment.

Life has greatly improved for me.

Going from no or little use of my arms and hands to being able to do everything again is a reversal in my book. Why they don't consider that a reversal however is beyond me.

I still have a ways to go before I reach the max dosage you can have and expect based on my current progress to be ok for the next 10 years.

Not at all bad for someone who has had Multifocal motor neuropathy (MMN) with conduction block for 16 years. You can be glad it only took 9 months for you, it was over 10 years for me and I was told I had everything from Luke Garrett disease to MS. Or perhaps it was all in my mind. If you think that did not ruin my day….

There is hope and it really could be worst. I will add you to our prayers tonight.
Ed[/QUOTE]

I was diagnosed over 4 yrs ago. The doctor said wait and see what happens. 2 years later I got a 2nd opionion alot more testing and MMN was again confirmed. Now a year and a half after IVIG not much relief. I am exhausted all the time. So tired some days I can hardly function. Since I run 12 heavy machines at work my neurologist wants me to go out on permanent disabiity. I'm nervous about going out. I am 56 years old and worried I wont be approved,then I have lost my job and insurance. Has anyone with MMN gone out on total disability.SSI?Does anyone have any suggestions? Doctor is afraid since I have loss strength my job could be dangerous. Hope to hear from anyone out there that might be going thru the same delemia.!!

If after a year and a half of no improvement on IVIG there should be escalation of therapy to another modality, ie. Rituximab, Cytoxan.

Hi Poppyjohn

*admin edit* I am seriously considering this for my future also, considering the rate of decline in my hands, and I'm also working toward morphing my job (self-employed computer consultant) into something less manual and more cerebral. I have to keep working to pay insurance premiums for at least 8 more years when I achieve Medicare age.

I'm a new guy here, and thank God for the internet that I found this thread! I have been suffering from lack of control with my left hand which is also my dominant hand. I have all the symptoms of Multifocal motor neuropathy unfortunate the 13 specialists which included 3 neurologists, 4 orthopedic surgeons, 3 hand specialists, and 3 hand, elbow, and shoulder specialists did not pick up on this.

I have been tested for ALS 3 times in the last 2.5 years and all tests come back negative.

I need to find a good doctor in the Saint Louis area...

Hi folks. I also am new to this forum, new to this disease, and new to IVIg. My situation is a little different. I have several kinds of neuropathy due to a rare non-Hodgkin's lymphoma called Waldenstrom's Macroglobulinemia (don't blame me - I didn't name it). WM is a very rare, very slow, incurable but treatable cancer. I am evidently rare in several ways. Rare cancer, rare presentation (neural pain), and rare combination of neuropathies (peripheral neuropathy, small fibre neuropathy, and multifocal motor neuropathy). Aren't I just too lucky.

I thought I'd say hi and introduce myself briefly. I just finished my very first IVIg treatment yesterday. It seemed to go well. I got tired today easily but hope this might do a couple of things for my situation. My doc talked about it might not only help the MfMN (likely) but also keep my body from producing the mutant IgM antibodies that define this cancer (and are attacking my nerves directly - also likely).

Anyway, as I said I'm new here and actually just found this forum today when I did a search on MfMN. I know that community is critical for people in our situation even if our situations vary. And people who have a clue by having the same or a similar disease are always easier to talk to since they understand on a physical level. I guess I'll sign this with my WM talk list signature (with legend).

Bret **
57 - Phoenix, AZ (Tempe)
Dx - 12/09, IgM - 420 (6/11), PN+SFN
Rx4(12/10-1/11) failed to reduce neuropathies
(R+Dex+Cytoxan)x2(5/11-6/11) increased neuropathies
(R+Dex)x2(6/11-7/11) increased neuropathies
PPx8(8/11 twice weekly) reduced SFN dramatically, stopped PN advance
PPx12(9-11 once weekly) attempting PN reduction(stopped before last four)
11/11 nerve conduction study showed motor nerve involvement
IVIg x3+(11/11)

(Dx = Diagnosis, PN = Peripheral Neuropathy, SFN = Small Fibre Neuropathy, R = Rituxan, Dex = Dexamethasone, PP = Plasmapheresis)

Disability
 

Hi, poppyjohn,

I filed for disability, as I too have multi-focal motor neuropathy.
I was not awarded any money from my claim, but was given access
to medicare early - as no insurance company will even touch me, unless
it is through a work group.

Bret,
Yikes! That seems like alot for one person to stand up to by themselves! Good for you to have such a good sense of humor. I'm convinced that most of our cures will be helped by a positive attitude.
I was diagnosed with MMN back in 12/2011 and started IVIG treatments at the end of that month. So far, it doesn't seem to be helping much, but I'm still hopeful. I did have a very positive response to the first "loading dose" of IVIG. I felt totally rejuvinated for around 6 hours, then crashed hard. My IV nurse said this happens in about 2% of the cases.
From what I can see, profound/extreme tiredness seems to be a pretty normal reaction to either

Oops!
 

Seems like I pressed the wrong button and accidentally posted! That happens when you are trying to type with one hand and its the non-dominante hand! Anyways, tiredness seems to be pretty standard for either MMN or IVIG. My treatments have been once every two weeks. It takes 7-8 hours for each infusion. Thank God work has been good to me and has allowed me any time off I need! They're even paying me for any time missed!
Anyways, if you have any thoughts, questions, or just need to vent, I'm your man!

Take care and keep up that great spirit!

Scott

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.

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
View Public Profile
Send a private message to Rufus
Send email to Rufus
Find More Posts by Rufus
Add Rufus to Your Contacts


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.

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.

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.

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

tonyp
 

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.

mmn question
 

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

Usually if someone has an allergic reaction to IVIg they try a different brand. Some people take prednisone or some other anti-allergy medication prior to infusions to prevent this (I don't do prednisone because it can worsen MMN sometimes.)

Neuropathy Support Formula; Deanna Protocol; ketones
 

This might be the same Neuropathy Support Formula discussed elsewhere in Neurotalk, for instance at http://neurotalk.psychcentral.com/sh...upport+formula

I looked that product up and tried to order some but was unsuccessful due to their flaky web site; however, having found out what's in it, I adjusted my supplements to include some of theirs. I should say that I confirmed their possible helpfulness with independent research, including many helpful posts by Mrs. D, a frequent contributor on Neurotalk.

There's also an interesting site called Winning The Fight (google it) which promotes a list of supplements for ALS; again, many components agree with my research. An additional one is a ketone ester. I've been on a ketogenic diet for two years now because ketones have so many neuroprotective (among other beneficial) effects. A ketogenic diet is very high-fat, low-carb; it's been used for 90 years to treat (and cure) pediatric epilepsy. While there is a lot of basic research (mostly with rats and mice) going on in investigating ketones' effects on things like Alzheimer's, Parkinson's, ALS, and other neuropathies, this is the first site I've run across that is encouraging people to actually try it.

There's a lengthy discussion about this Deanna Protocol in the ALS TDI forum (again, google it, as we can't post links), some hopeful, some hostile. You do have to be VERY skeptical with these things. One good thing about Winning The Fight is that they don't appear to be selling anything, unlike the Neuropathy Support Formula people.

Also keep in mind two other things:
1. Don't make the common error of mistaking correlation with causality;
2. Dietary or supplement treatments can take a LONG time to manifest. In the case of KD and epilepsy, it generally takes two years if a cure happens, though lessening of seizures happens fairly quickly.

Hello Christine,
I have been diagnosed with MMN Jan. 2010. The doctor also gave me IVIG and after the first dose, (of two.) I got AMS, (Aseptic Meningitis Syndrome.) 4 month later, the doctor suggested a different brand of IVIG, given over 5 days, 20% each day. After the 3rd dose, I got AMS again.
A different doctor, advised by my first neurologist, prescribed, Hizentra, given subcutaneously, at home.

I started, 7 days of 3 grams, (15ml) 2x a day, the first week, then 2x a day, twice a week. I did we'll on it, but after 8 month the doctor up't the Hizentra to twice a day, 3x a week. And since October of 2012, he up't the Hizentra to 4x a week, twice a day. I live in Michigan and go to U of M. The doctor now is advising for me to consider Rituxan. I also have a a elevated protein in my blood.

The Hematologist and the Neurologist think MMN and this elevated Protein may be related, not sure however. It seems the Hizentra works well, but need more as time goes on. It is also very expensive, my insurance and Medicare pays most of it. I am worried trying Rituxan since I could not tolerate IVIG. Would like to hear from you and others?
Maria

Hi there,

I am new to this group. I recently diagnosed with MMN months after seeing close to a dozen doctors in different disciplines. Now I just started the first treatment of IVIG with 2g/kg/month. Don't know the efficacy yet.

My question is about applying for LTD from my company. My job demands me to respond promptly with my fast key board typing. But, due to MMN I have lost use of my left hand fingers. which have a huge impact on my response time and operation accuracy. I am worried that I may lose my job because of that. The neurologist suggested that I apply for short term disability leave (STD). But, by doing some self education, I realized that, MMN is not a short term disease. What happens after the 3-6 months is over?

Anyone has experience in applying for, and getting, long term disability(LTD)? I guess what I would like to know is:

Does "drop fingers" qualify for LTD?
How to apply for LTD and what procedures do I need to go through?

Thank you in advance.

Donald

Ltd
 

Hi Donald. I'm pretty much in the same boat as you. I'm a computer consultant, and used to be an awesome typist. Now I'm thankful that the latest Mac operating system has dictation built in.

I'm self-employed and am adapting to my limitations, such as not being able to do as many hardware jobs and repairs as I used to. All those teeny-weeny screws just don't cooperate when your hands shake! And, as you say, MMN looks to be a long-term thing. Only the very few lucky ones see much of a reversal.
*admin edit*

Hi, I was dx with ALS/possible MMN a month ago. No insurance. Trying to arrange things. I am wondering, have any of you tried tumeric, Vit D3, or other unconventional therapies? Also, before you got symptoms, did you hit your head really hard? Doc said that probably didn't matter, but I am curious. I have had slow wasting of my left hand and arm, now it's moving into my right arm and leg. I cannot use my left arm or hand for much of anything now. No pain. I guess I'm looking for an alternative to IVIG, hate needles. Thanks for having this forum, it is very helpful to read what others are going thru.:)

I have MMN, was diagnosed it December 2009. I have been on IVIG and it has helped a lot. I also take a very good multivitamin designed for people with neuropathy problems but has found it to not help.

I would seriously consider getting IVIG asap before just condition worsens and you are not able to walk. If you live in the United States I would apply for Medicaid or Medicare immediatley. This disease will cripple you permanently if you do not get treatment soon. I wish you the best of luck

Hello Doug,
I also have MMN, I was 65 years old (Female), when I was diagnosed. Now I'm 69 years old. The IVIG did not work for me. I got mennengitus 2x from that drug. This was back in 2010.
On Feb. 2011 my Neurologist put me on Hizentra, per infusions, done at home. 3 grams (15 ml) twice a day, twice a week. Over time that has increased to 4 grams, (20 ml ) twice a day, 4 times a week. The drug is expensive, but I do have Medicare and Humana supplement insurance, with a co-pay of $860.00 per month. However, I'm doing very well on this drug, so far.
Sincerely,
Maria W

I would just like to point out that Hizentra is also immunoglobulin. It's just a subcutaneous version rather than IV. Here is information from the manufacturer:

Maria, do you find that it actually reverses some of the weakness or other MMN symptoms? I have never run across this blood product before, so I'm curious, as it's getting harder and harder to start an IV and I'm reluctant to get a port.

If you are new to MMN, be sure to do some Google searches for other online resources. This forum is very good but there isn't a lot of MMN activity.

Hi sorry to bother you but I am new to this site and cant seem to find how to post a messege from scratch. Maybe I am not looking in the right place but would be grateful for any help.