Hi my name is David
I am new to this Forum
I am being tested for MMN, I won't find out if I have it until 9/11/2015. When I read about MMN, I match the symptoms to %100.
It started in February, after some exorcise I noticed twitching in my left bicep 24/7. About a month after that I notice my left hand getting weak and muscle wasting in my hand. Now its August, I have twitching in both biceps and both hands cannot handle 2lbs. Know my legs are twitching and I have noticed weakness in both of them. I hope I have MMN, because there is treatment for that. I don't want the blood work to negative, because that puts ALS back in the picture.
Tell your MMN story!(131 posts) (47 voices)
Hi my name is David
Hi DaSaint, welcome to the MMN Forum.
You're probably aware that there is no definitive test for MMM. Largely it's a case of ruling out other things, including unlikely-sounding stuff like B12 deficiency, Lyme disease, and celiac disease. Even that can be difficult; just this morning I was reading a story about tick-borne diseases, of which Lyme is only one, and discovered that the standard Lyme test is very unreliable.
While some people have elevated anti-GM1 antibodies, it's only about half, so having the elevated antibodies is a plus in the MMN column, but lacking them does not rule it out. Ditto elevated CSF. The EMG/NCS is always abnormal. My Mayo Clinic doctor says that diagnosing MMN is more of an art than a science; this is why it's very important to see someone who's familiar with it. I drive over 1000 miles for my annual checkups in Minnesota.
Please do stay in touch and keep us apprised of your progress.
I have had EMG/NCS on every extremity. The only one that abnormal was my left arm, where the symptoms first showed up. I had an MRI of my neck too. I live near Detroit and I am seeing a Doctor that specializes in MMN.
Well I was diagnosed with MMN in September. My doctor wants me to have IVIG every 2 weeks until my next visit November 19th. At that point he is going to start Physical Therapy. I now have extreme weakness in my left hand and I can no longer straiten my index finger.
Hi all, I'm a 35 year old female, I haven't been diagnosed yet. My symptoms started in April, with a spontaneous right wrist drop that came on within 30 minutes. Of course at the time I had no idea what was going on, just that my hand wouldn't work no matter how hard my brain tried to make it work. No pain at all. Loss of sensation in thumb and first finger area. I didn't know who to see, so I went to a arm/hand specialist (surgeon) where I live. He had never seen anything like it, sent me for emg which showed him where the nerve was being compressed, and on May 15 I had a surgery to release it, which amazingly worked and pretty much full function of hand within a month of surgery! But then... not even a month later - same thing happened to my left hand and left foot drop- this time my doctor wanted an explanation for why it keeps happening before doing another surgery which I agree with. No good neurologists where I live, saw one and all he did was throw a case study at me about HNPP and told me to take B12. My surgeon referred me to Mayo clinic Jacksonville. I saw 4 of their neurologists the first time I went an dthey have never seen anything like it and told me I'm their special case - I guess because it doesn't fit neatly in with anything else - GBS,HNPP, CIDP, MMN, I've hear dall those thrown around. I also had a 5 hour long EMG/NCV over my whole body, I lost track after counting 50 needles going in. They see where the problem(s) are but still don't know why. I am going back next week because they want me to see a rheumatologist?? Which I'm not sure why - i don't have swollen joints/pain. And also have the spinal tap. I'm scared about losing my job, it requires tons of typing, plus I am missing a ton of work. People try and understand how it feels, but they just can't. I wouldn't have either until it happened to me. The best way I describe is telling them to put 1 arm behind your back and do about your day as usual. Plus, I am exhausted all of the time, not sure if its because of what I have, because normal everyday tasks just wear me out more because its harder to do, or the depression coming from this. Has anyone else seen a rheumatologist while trying to get diagnosed?
Hi keriw, welcome to the MMN Forum.
Your case is indeed unusual. When I first went to the Mayo Clinic, they spent five days testing me for everything under the sun; I already had an MMN diagnosis, but they wanted to confirm it and MMN is largely a case of ruling out other things. In your case, have they also considered things like Lyme disease, B12 deficiency (I know you mentioned this), Celiac disease, and other things that can mimic MMN?
How are your symptoms when you get cold? Cold paresis is almost singularly a feature of MMN.
I'm sorry your post got caught in the spam filter for a few days. Don't let that slow you down, please keep us posted on your progress!
Hi, my name is Jim, and I am a 43 year old male living in the Philadelphia area. I’ve been lurking here for about a month as I come to grips with my diagnosis, having found this site while doing quite a bit of internet research (against everyone’s advice). I am happy to have found this site, both as a source of support as well as useful information about this disease which I may or may not have. In early October I was diagnosed with either an immune mediated neuropathy such as MMN or lower motor neuron disease. Like many of you, it seems, I am hoping for the former, and my symptoms most seem to match with MMN. My first issues appeared in February of this year when I noticed that I was having trouble squeezing my left thumb and index finger together when clipping my fingernails. I didn’t do anything about it for about a month hoping it would go away, but finally made a visit to my primary care physician. Since that time I’ve seen several doctors and gone through a battery of tests, including multiple EMGs, MRIs, CT scans and blood tests, before finally being referred to a neuromuscular disease specialist, who came to this initial diagnosis. I am somewhat lucky, I think, compared to most of you because it has taken less than a year to get to this point. One of my closest friends is a neurologist at Penn and was able to get me to the right doctor relatively quickly once he saw the progression of my symptoms.
Since my initial problems clipping my fingernails, my left hand and arm have gotten progressively weaker and have started to atrophy and I have occasional fasciculations pretty much all over my upper body. My right arm has started to feel a bit of weakness as well. With use it gets tired easily, and I get a burning sensation, almost like a buildup of lactic acid. Anyone else have that? The EMGs on my left arm have come back abnormal, and my right arm shows one small abnormality. No signs of conduction block yet, and the blood test was negative for anti-GM1 antibodies. I also have only lower motor neuron and no upper motor neuron symptoms so far, so the diagnosis is not ALS (yet). My neurologist has put me on a three month trial of IVIG, 35g per day over five days or 2g/kg for the 5-day round, which was thankfully approved by insurance. I had my first round last week, and was able to get through the daily dose of 35g of Privigen in a little more than 2 hours with no adverse effects other than a minor headache and some nausea. Thanks to this site, I know that each individual’s response is varied, so I’m not expecting a miracle. However, I am cautiously optimistic that the IVIG will work.
Anyway, I just wanted to share my story. I’m happy to have found this site, and hope to update you with good progress in the future!
Hi jimf, welcome to the forum. I'm glad you decided to speak up. I'm also glad you decided to ignore those who told you not to do any Internet searching.
My muscles also get tired with use, but I don't experience the burning you describe. We'll see what other people say. My thumbs do give me the most trouble, and that's where I noticed symptoms first. In my case, I had trouble tearing open oatmeal packets. And almost everybody here will tell you they wrestle with Ziploc bags and zippers. It certainly does give one a new appreciation of opposable thumbs!
Do please keep us apprised of your IVIg results.
Thanks for the response. It's really strange to be in this position of hoping to have a permanently and progressively debilitating disease like MMN. But obviously the alternative is much, much worse. At one point the doctors ordered an abdominal CT scan to rule out the small chance of lymphoma. I told my wife I was rooting for cancer! We got a good laugh out of that. Despite the bleakness of the situation, we're trying maintain a positive attitude and just worry about the things that we can control. I think that attitude has helped us maintain our sanity.
I will let everyone know how the IVIg goes. Next round in 3 weeks.
Hi everyone, thought I should pop in and inform you that I have finally started my IVIg treatment as of yesterday, back to the hospital today for my 2nd infusion and again tomorrow for 3rd then once every 2 weeks for the next 3 months.
I still don't have the MMN diagnoses from the neurologist but am almost certain that's what it will be.
I already have muscle atrophy in my right hand and have noticed weakness in my right leg also.
I am 46 years old and have had symptoms for approx 10 years before I noticed the muscle wasting which finally led me to the specialist for EMG, MRI, Spinal Tap etc and then a 2nd opinion at my Neurologists request.
I will try and find out the dosage etc of my IVIg, I haven't really been informed of what the specialist thought I have and did my own research to find this forum.
Good luck to all!
I think you may be correct to question the validity of one category for MMN. There are two puzzling features of MMN that have always bothered me when it is classified as having an aetiology in the peripheral nervous system (PNS): I) the asymmetry of the symptoms, and, II) the 50% figure for those producing autoantibodies to the GM1 ganglioside. When you hit 50% in any scientific study it usually means something is up. It can be in the testing method, it may indicate a purely RANDOM variant, but whatever the reason it usually indicates a paradox - a problem with the model being used to describe the genesis of the disease. I do not produce the GM1 ganglioside, yet I have the asymmetry and respond well to IvIgG....why? I am yet to find anything in the literature that goes into any depth regarding these two features. The asymmetry woulkd suggest that this either just happens to occur randomly in 100% of all cases of MMN (total bullshit) or, there is a common origin closer/within the central nervous system (CNS). I am sure all of us have had many scans on the bracial plexus, the spine, etc...that show no issues. This vexes me.
As posted in another thread, I have been taken off IVIG as it didn't help. I was on 27g per fortnight (weight 75kg)over approx 3 hours per infusion.
Neurologist has diagnosed the rare Progressive Muscular Atrophy (PMA) within the MND spectrum.
I still think I have MMN as if it was MND I would be dead by now as I have had symptoms for over 10 years and have been seeing the neurologist for almost 3 years.
I'm trying to stay positive and take each day as it comes for now until I get my disability pension through and then I will decide if I give up work completely or just continue with less hours.
I will be insisting my Neurologist give me some definitive answers when I see him in 6 months time and if he is unable to do so then will request another referral to someone else.
Cheers Carolyn.Posted 9 months ago #
Hello you all,
My name is İpek. My mother has diagnosed with MMN 12 years ago. at that time, she was in the worst condition like she couldn't use her one arm at all. After starting to IVIg treatment, she finally found her cure. MMN is related with everything in your daily life; your movement, little home works, weather, stress etc. everything that you can imagine. She finally could improve after all. However, with the loss of the grandfather, her conditions had relapsed with the incurable pains with this time. Using IVIg is curing neuropathy symptoms but not pain. I also know that pain has no relation with MMN, but we know that pain is in the damaged regions. Is there anyone who suffering from pain? Could it be related with other diseases? Could it be related with psychology?
Thank for all. I'm glad to find you :)Posted 5 months ago #
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