MMN with CB
 

I've been diagnosed with MMN w/ CB and finished Round #1 of IVIg treatments (5 treatments in a week). I've already noticed improvement. I'm wondering if others with MMN that have had IVIg treatments for years have regressed back over time or if some have maintained the same level of initial improvement. I'm curious about what to expect down the road. Thanks for any thoughts & info.

Hi Kelly! - I've CIDP or agressive neuro demeyelinations of sorts...
 

I've had IVIG therapies for the last five + years and am ever so glad I did!
One place I'd encourage you to look up is: http://www.igliving.com/ Now you have to web up this web site? It's easy to read all the back issues and catch up on the whole IVIG thing....
Learning about the Products and the Processes? Helps you be a better patient [just in case things go wrong?-not often they happen? But when they DO? KNOWING ABOUT WRONG is life-saving for YOU!
As with any therapy that puts blood or blood products into you? It IS an invasive procedure. Not like an operation or such, but stuff is being put into you! You should learn and know what good is being done, and maybe what the risks are...
The odds for any neuro issue on IVIG vary and vary widely. Depends on whether it's a genetic or immune modulated problem to some degree? But then, we are NOT hot house flowers! We do not live, nor have lived in in a controlled series of perfect environments. Nor have we been 'selectively bred' to avoid diseases. Or there aren't tests to diagnose issues NOW to determine such... Get my drift? IT IS NOT EaSY to know what we have!
Check out IG Living and ask questions away! Please! I got lucky and responded to it. I am soo grateful that I did and am still! :hug::hug:'s j

Thanks for the info. I've subscribed to IG Living and will check out the back issues. Glad to hear the IVIg treatments have been working so long for you. It give me hope. Thanks for your tips. Bless you.

Each of is is different with different neuropathies?
 

But, it works! Combined with therapy to help you rebuild your strength and re-learn to walk not only well? BUT PROPERLY is key to getting parts of your life back.
Be cautious about 'overdoing' anything at any given time tho. Go Slowly recover better is my motto. Ask of both your doc and therapists for exercises you can do at home in-between therapies and also use to maintain your strengths once you are thru with the PT. It's far harder to keep up the discipline to keep at it once at home and all 'seems' to be 'fine' tho? BUT it's essential to keep it up at home to be able to keep GOING!
However? Don't plan on PT on any days you get infusions! Heavy exercise, and for us? Anything is heavy exercise....isn't recommended immediately before during or after infusions. Besides, w/pre-meds? You won't want to or care...
As for the 'WHAT to EXPECT' aspect? Who knows? Each of us come down with neuro stuff soo differently. It's hard to piece together ALL of those with immune neuro issues, let alone what happened when to prescipate these effects. Many docs are informed, and too many not-informed and thus putting puzzle pieces together is even harder.
Kelly? There IS HOPE! There always IS HOPE! Don't ever forget that! The key is finding the docs who can give you hope! Keep LEARNING! The more you know, about your tests and results? The better YOU are able to learn even more than you ever thought you'd need to know about what you possibly might have and THEN how to take care of yourself with the whatever you have! Don't sit and be miserable about it all? LEARN! Then, LEARN MORE! Be ABLE TO TALK TO YOUR DOC IN LANGUAGE HE 'TENDS' TO TALK IN. I've found my doc to 'respect' me more that I've learned the lingo? Never ever say: I've found 'this/that' on the internet? Cite only research such as from the NIH or PUB-Med..... and then leave it at that. YOU are being proactive, if your doc isn't? Then he/she mite be behind the 'learning curve' for you! Hugs and hope always -j

Thanks for the info. I did finally find a Dr. that is in-state and on my insurance - yeah! He said he's the only one he knows of that treats MMN patients in the state and I am only his 6th patient. So indeed this condition is very rare. Good tip about citing info. to the Dr. Yes, I agree it's very important to be proactive. Hope you are doing well and have a great week.

Mmn-cb
 

HI Kelly I a Jim from the UK and just about to get my first Immunoglobulin treatment. Are you still getting improvement since your last posting?
Regards Jim

I've been getting IVIG since May (3 months now). It has reduced the fasciculations elsewhere in my body, but my left hand is still losing functionality. Before treatment, I had lost extension in my thumb and index finger, and this week my little finger went. I've been hoping that maybe the minor symptoms get better first, and major ones take longer, but my doc seems alarmed at the lack of improvement in my hand. However I am his first MMN patient (diagnosis still tentative). I've been looking for reports of various experiences with IVIG response with little success, and would appreciate any reports or sources. Thanks.

While I've CIDP? The first folks I'd ever met on IVIG were for MMN.
 

So many of them said this: I don't know where I'd be without it! I can walk again and actually do things!. I have hope, and more hope again.
I believe that sort of says a lot? Or more likely A GREAT LOT???
For me with CIDP [mostly sensory, but some muscular affects?] It made a world of difference after the very first day, and a Galaxy of difference by day 2! I could actually WALK for over ten minutes without agonizing pain and the need to recover in sleep for the four days following! I got my appetite back!
By the way? I've been on it since 2004 and now have a 'port' installed, as my veins are sort of punched out? IF you can, ask now and learn about ports. If you are hard to get an IV line into [AKA as 'Stick'], It can make life soo much easier or less hassle. Then later on are the options of sub-cutaneous infusions...but that'll be between you, your insurance co., and your docs.
For me? I loove the stuff! It alone has done more for me than any medications have, either singly or in combinations!
I AM GRATEFUL to ALL my docs for allowing me to receive this 'gift' of blood. It's so strange and complicated how I came to need it? But I am so releived that I CAN receive it as well!
Do not be shy about asking questions! EVER! Not one question is too simple or silly to ask about!
I hope this helps, and please, ask away! There are lots of good folks here who can help! :hug::hug::hug::hug:'s!!!!!!!! - j

Treated for MMN with conduction block over the last 3 years
 

Before the IVIG (which for some reason did not work the first time; dosage too low we think) 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 have now been on IVIG for at least the last (3) three years and have have all of my muscle mass back, and hardly any control issues. Over the last year I have lost 76lbs with no change in my lifestyle.

Life has greatly improved for 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.

Take care folks
Ed

1 year, no improvement
 

Well, now I've been on IVIg for almost a year. I have been to the Mayo Clinic and have had the MMN diagnosis confirmed. I don't have any improvement in my symptoms; my Mayo neurologist says that a reasonable expectation is to not have any worsening, I would be lucky to see any improvement. He's got me on a monthly dose of .4 g/kilogram. This started in November, four months ago. Prior to that, my local neurologist had me on 1 g/kilogram. I'm going back to the Mayo in a month, and will talk to him about possibly upping the dose.

In the meantime, I've been doing a lot of reading about ketogenic diets. It's been used since the 1920s to treat epilepsy, and current research is aiming at Parkinson's, Alzheimer's, and even ALS. Ketone bodies appear to have pretty good neuroprotective effects. Having already been on a low-carb diet for over two years, it's not a giant leap for me, and I figure it can't hurt anything, provided care about side effects is taken.

I've also run across some information about progesterone antagonists helping to remyelinate peripheral nerves. again, this is pretty preliminary research. Anybody know about this?