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.