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