CIDP is very similar to MMN; actually, they used to think MMN was a subset of CIDP (that's no longer the case). CIDP involves sensory nerves rather than motor nerves. I would have to go back and reread your symptoms. Do you remember what markers he said were wrong for CIDP?
Welcome! Please read, then introduce yourself.(568 posts) (156 voices)
No, the neurologist just said the markers were wrong, he didn't say what markers were wrong. I can try and find out though.
Here's what he said in his reply:
"When talking about these two conditions it is very difficult to completely rule the other out as they can have similar findings. The pattern of weakness, lack of major sensory symptoms, and presence of GM1 antibodies all point towards MMN rather than CIDP."
I'll see the neurologist next Monday, are there any other questions I should be asking?
Those might be the symptoms he's talking about, then. CIDP is mainly sensory while MMN is almost purely motor (although I have some numb spots after so many years). Traditionally, the presence of the anti-GM1 antibodies has been a checkmark in the plus column for MMN, but I just read an article that said it's even less important than that, if I recall correctly.
I would advise going to your appointment armed with a list of questions. Otherwise, it's too easy to forget what things you want to ask about. You might ask him, in a tactful way, how many MMN patients he sees. It's kind of a standard question I encourage everyone to ask—just so we can compare notes, not so much to gauge the expertise of your particular doctor.
I can't believe there is a forum for MMN, and I can't believe it took me this long to find it. Thank you Twitchy!
Here is my story: My name is William, I am a 50 year old male, married, 2 kids. I started having symptoms about 10 years ago or so -- cramps in my right hand and mild weakness in my legs. My doctor couldn't figure it out and we actually did not make the connection between the hand cramps and the leg weakness -- I thought the latter was simply soreness from overdoing workouts. He suggested the hand cramps would probably go away on their own. The symptoms started getting worse and he still couldn't figure it out, so I switched doctors. Second doctor couldn't figure it out either. Eventually symptoms were so bad I could barely walk. Going up a flight of stairs required huge effort, and if I squatted or kneeled I was then completely unable to stand up again unassisted. I went to a doctor friend of mine who ran extensive tests, and eventually referred me to a neurologist. The neurologist ran yet more test (nerve conduction studies, etc) and after a while came back with a medical journal open to an article about CIDP. He told me he believed I had CIDP but he was completely unfamiliar with it, so he referred me to another neurologist who specialized in CIDP and related conditions. After more testing this last guy finally told me that I had MMN. I started IVIG immediately, and the change was astounding -- I went from being almost unable to walk to regaining full function just a few days after my first treatment. The whole process -- from initial symptoms to final diagnosis, took almost 2 years.
I have now been receiving 3-day infusions of IVIG every 4 weeks for about 8 years. As long as I stick to the schedule, I am essentially symptom-free for most of the time, with the exception of the mild side effects I get from the IVIG (headaches, leg cramps, occasional fasciculations in certain muscles). Towards the tail end of my 4 weeks symptoms sometimes come back in force (in my right hand and right foot), and other times it's very mild. I have noticed that if I travel by plane in between treatments or if I am under stress symptoms come back much sooner and stronger.
As frustrating as the initial diagnosis process was, I'm encouraged by the increase in knowledge I have seen over the course of the 8 years I have had the disease: they know a lot more today about MMN than they did 8 years ago. We even have an FDA-approved drug today, which was not the case 8 years ago! Made dealing with insurance much, much easier.
Still, the amount of conflicting info is shocking. I have heard from at least one source that there is a chance MMN can be triggered by an immune reaction to a flu shot. So, just in case, I stopped giving flu shots to my children, even though I have also often heard it is NOT passed down to your children, which I hope is true.
Thanks again to twitchy for setting this up!
Greetings, wgoldfarb, glad you found us.
Thank you for the detail about your diagnostic journey, which was more direct than a lot of people experience. I'm glad you're seeing benefit from your treatments. There's a good possibility that if you have a return of symptoms near the end of your cycle, some permanent axon damage can accumulate, so it's a good idea to tweak your dose and interval to prevent that.
There are anecdotal stories about MMN being triggered by a viral infection, other illness, surgery (possibly from the anesthetic), or injury. I know I've stopped getting flu shots myself. Not so much for any causation reason, but just because I've come to believe screwing with our immune systems might not be so wise. That's just my opinion; everyone needs to decide for themselves.
If I may nitpick about one little thing on your post: you list the side effects of your IVIg as headaches, leg cramps, and fasciculations. The headaches are for sure a side effect. Cramps and fasciculations are standard MMN symptoms. Do you experience them shortly after a treatment and then they go away? Did you have them at all before you started treatment? There's a lot of variety amongst us unicorns, so it's interesting to hear about all the variations.
Hello Twitchy, well went to my app't w/the Neurologist and still don't have a diagnosis. He said I had two symptoms which led him to believe it's MMN and that was conduction block and a high level of something which could have been those GM antibodies. But since there hasn't been any significant improvement he wants to re-run the EMG tests.. Thought that was what my app't was for so had to "try" and make another app't. Was told there are no app't available and 30 people ahead of me waiting. Wasn't happy about that because I'm getting weaker by the day. So there is a long, tiring tale about what entailed but it resulted in an app't mid-July. Still working on an earlier date though. And, after i get the EMG tests if he is still thinking it's MMN then he wants to send me to someone in the bay area for confirmation. Looks like I still have a long, long "row to hoe." So, back to the waiting game again. Wasn't has confident after my app't and I was going in. Will continue to put one foot in front of the other though and hope for the best. Have IVIG Tomorrow and Friday so maybe something will click for me. Have a good week/weekend!! Oh, and I still get those fasciculations too and they just come and go in case wgoldfarb is reading this. GG
Hello. I am Susan, and I have been tentatively diagnosed with MMN. I am 58 years old, married for 37 years, with 3 adult sons. I work full time as a school district administrator. I'm a former teacher and elementary principal. I have had chronic spinal pain for years. I had a cervical spine fusion surgery in 2011 followed by being rear ended a year later. Lots of pain. In October of 2015 I suddenly had atrophy in the first dorsal interosseous muscle in my right hand. (of course I am right handed). Original thinking was a pinched ulnar nerve at the elbow and neck (double crush syndrome). The elbow has been ruled out with EMG testing. I will be getting a cervical spine myelogram to determine if there is any entrapment from the neck. The neurologist seems absolutely certain that it is not due to any entrapment of the ulnar nerve, as the atrophy is only in the first dorsal interosseous and not also on the pinkie side of the hand. At first we thought ALS, but the lower extremity nerve testing was normal, and progression has been extremely slow. Neurologist now says ALS is "very unlikely. He wants to start me on IVIG. I am thinking I'd like a second opinion first, and have asked to be referred to UCLA, as I live in the Los Angeles area. We are awaiting authorization. Thank you for this forum, I appreciate the opportunity to share, and learn from all of you.Posted 9 months ago #
Replying to @Susan E's post:
Hi Susan, and welcome to the MMN Forum.
You are wise to be thinking about a second opinion. In order to diagnose MMN, they have to rule out a lot of other stuff first. Make sure you see somebody who has experience with this kind of thing. Best of luck!Posted 9 months ago #
I was diagnosed on february 2016 with MMN. I am under IVIG treatment. Started with Gammagard with no effective results (2 five day sessions) and five ensuing Gamunex sessions every 3 weeks with better results and improving disabilities. I have also started exercising in the gym and have started improving. I would like to know if there are in the market natural medicines that can foster improvment on hand fingers and feet.
Hi Omar, welcome. It would be interesting to get details about your diagnosis history and your dosage, if you're willing to share.
Some people report improvement with various things like lifestyle changes, acupuncture, and supplements, though it's always impossible to say if those things caused the improvement or if it would've happened anyway. Nothing is guaranteed, of course, not even immunoglobulin which only works for 70% of people.
You will get a lot more response if you ask your question in the MMN Facebook group. It's a closed group, which means you have to ask to join, and be accepted, before you can read or post messages. You will probably get a lot of suggestions!
There are also quite a few discussions here in the MMN Forum. I invite you to look around and read as much as you can. The most relevant sections would be Other Medical Treatments and Alternative Treatments. But other sections also wander off into these subjects.
My dosage is 100 g of Ig per day for two consecutive days every 3 weeks. Since my diagnosis, I have been doing exercises at a gym and swimmming. In addition I have reduced my food eating with no sugar at all and I have lost two sizes in my pant ( from 38 to 36) and lost 5 pounds. I am 68 years old, 5'1" and very active. I still play golf for a 12 handicap although know I use a cart instead of walking. I expect to walk the whole 18 golfs in the near future.
My history is simple. In October 2015, while playing golf with my buddies in Orlando for a week, I started feeling very fatigued and at the third day my middle, ring and pinky finger all of sudden did not work. Thereafter, to climb a stair was something very difficult to do and my normal walking dissapeared. The only way to walk was by moving the body from side to side. While being examined by different doctors all exams were superb excepts for the Ig. which showed a 3000 value when the maximum value was 2000. An EMG was performed and the Doctor told me to inmediately contact a specialist in the USA. Before the EMG three different diagnosis had been issued, to wit: ALM, CIDP and another one I don't recall. I came to the USA at the University of Miami Health Center where the MMN was diagnosed.
Ups. I forgot. The last two years have been very stressfull
Ups. I forgot. The last two years have been very stressfull and I am 5'11"
Hi.I'm a 34 year old male from Kenya, a medical doctor by profession. I was recently (3 weeks)ago diagnosed with MMN, rarely seen in Kenya.
I had sudden onset weakness of upper limbs that progressively within 2 days extended to my lower limbs. This left me almost paralyzed since i was unable to do anything with my limbs. My neurologist initially thought i had a cranio-cervical anomaly that was ruled out by MRI. A nerve conduction test confirmed the diagnosis of MMN and i was immediately initiated on IVIG for 5 days. By day 3 of IVIG, i started regaining power in my muscles and today i'm 10 days post my last dose and i have regained back all my functions with intensive physiotherapy. Thanks for having a forum for sharing experiences since this condition is almost hardly heard of in my country. I hope it doesn't recur since it's been expensive to get the full course of treatment, Most in my country would probably not afford it.Posted 7 months ago #
Hi apatdon, welcome to the forum!
I'm very glad the treatment is working for you. If I may ask a couple of questions… is your weakness symmetrical? Does it involve sensory, or motor, nerves? Because from the small description you gave, it actually sounds more like CIDP. If they are positive it's MMN, it's helpful to know about variations.Posted 7 months ago #
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