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 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..

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

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

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]

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

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.

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.)