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

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)

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

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

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

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

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