Getting offended is so easy--been there, done that, trying now to keep it as cool as possible! Well, thanks for the reply and that is too bad. Do you have any idea what he had been doing to control his MMN so long? Thanks for anything you recall.
Welcome! Please read, then introduce yourself.(568 posts) (156 voices)
He was into blue-green algae as well as clean lifestyle. I just saw that he has recently rejoined Facebook and is in both MMN groups there.
My name is Barbara, 76 years young, golfing "was" my new job until last year. I am in the process of being diagnosed with something, MMN, ALS,something else? I started IVIG in January and have been gong monthly since then. Some days better, usually right after infusions and then 2 to 2 1/2 weeks after that things start going south again. Going back to Neurologist in June for re-testing. This is all new to me and I'm struggling to find answers, possible remedies or aids that might help. Last May my doc thought I had Carpal Tunnel i my left wrist/hand and she gave me a wrist brace which did nothing but make my left hand/wrist/arm feel like a wet noodle when I too the wrist thing off. It took until the end of 2015 to get to a Neurologist that supposedly specializes in MMN, ALS and probably other Neuro related things. Initially he thought I had ALS but after blood test and other Electrotype tests he was leaning toward MMN. Am due to go back in mid-June. Now my left hand and arm and fully involved, my right hand is now starting to weaken and I have started having a problem walking. There doesn't seem to be anyone to share experiences with and I just found this website today. Looking for some feedback as to what is or isn't normal, if there "is" a normal. Anyone want to take a shot? Looking forward to some feedback and have read some of the stories. Don't know how I'll get responses, on this website or on my email address given when I registered. Thanks!!!
Hi golfergirl, welcome to the forum.
If you've been reading the stories, you will see that there is no "standard" list of symptoms but many commonalities and many variations. If you are seeing improvement from the infusions, that's a pretty good sign it's not ALS.
Thanks for the reply, appreciate it. I "do" see "little" signs of improvement and then things seem to go south. In talking to my Neurologist he has changed the IVIG sessions to every 3 weeks. Hopefully, that will help. I just don't know what to expect as far as how long it takes to see long term or major improvement (longer than a day to two). Also, has anyone used Physical/Occupational therapy for the degenerating of the hand and what they were shown to do? Does it help? Haven't read any stories relating to this. I recently got a regular walker to help me with balance and "confidence" but am trying to use it just when outside the home. Any suggestions?? Questions I might or should be asking the Neurologist?
Finding the right frequency and dose is a matter of trial and error. Have you found the Facebook group? They have a lot of day-to-day comments, where the forum here is better for long term information storage and retrieval. There have been at least two people on the Facebook group who claimed they're recovering some functionality with exercise, in one case therapeutic guitar playing.
Hello again Twitchyfirefly,
No I haven't looked into the Facebook Group but have read a little about it in some of the posts. I was on Facebook once but am not to good with the Social Media things. Could be I just don't know how to use it!! There was just "way" to much stuff that came into my page. Seemed like "friends of friends of friends" all people I didn't know. :( :( I may give it a try again if I can get one of my kids to help block the unwanted junk. My next infusions are in two weeks and I'm hoping to see a more positive outcome with the shorter time between the infusion sessions. :)
Just a reminder to everyone… If you create a post and then don't see it appear right away, give it a day or so before you repost. Things have been getting caught in the spam filter, and I try to check it at least once a day to liberate the legitimate ones.
Wow, really? something just erased everything I had typed. My next app't with the Neurologist is 6/13 and other than the obvious question "what exactly do I have" is there anything I should be asking him? I'm wondering if there is a specific test or tests that you know of that I should ask about?
Have been thinking about getting a second opinion but don't know how to go about that outside of my HMO. I'm interested in finding some current research on MMN but haven't been able to locate any of the Internet. Is there an, to your knowledge??
Should I be tracking the kind of IVIG I'm getting, and the quantity? The frequency has now been changed to every three weeks. Does anyone go to Occupational Therapy and if so, does it help? I'm finding that if I include more protein in my diet it seems to help me feel better but haven't found any info on that either. Do you have any input to share?
Nothing else to share, still feeling a little lost and somewhat isolated since there doesn't seem to be any support group(s) around. Still looking. Thinking about checking out the Facebook group but don't want to open myself up again to all the junk I got the last time.
Have a good week, thanks for your postings, I'm trying to read more each day.
something just erased everything I had typed.
That's not the problem I was talking about. What's been happening is that after people click Post when they create a message, it doesn't show up in the forum. Often this is because it's caught in the spam filter. I check every day and liberate the legitimate messages.
My next app't with the Neurologist is 6/13 and other tha n the obvious question "what exactly do I have" is there anything I should be asking him? I'm wondering if there is a specific test or tests that you know of that I should ask about?
Even if he gives you a diagnosis, keep in mind that many people bounce around between various diagnoses for years. This is a pretty mysterious ailment and misdiagnosis for many years is the rule rather than the exception. As for tests, there is nothing definitive for MMN or ALS or CIDP, all of which are similar (and there are a whole bunch more in the alphabet soup of neurological diseases). Usually you will have an unusual EMG/NCS. In addition they usually test for specific antibodies, they might do a spinal tap to check for protein in the CSF. None of this is definitive although a lot of positive tests add checkmarks in the Possible MMN column.
I saw two neurologists in Utah before I took myself to the Mayo Clinic because that's where they see as many cases of this as anywhere. With something so rare, you want to try to get yourself somewhere that is familiar with it. If you read around in the forum you will find other medical centers that people have found knowledgeable. At the Mayo, I underwent five solid days of many many tests, most of which were to rule out other things. There have been cases of celiac disease, Lyme disease and B12 deficiency, for example, that were originally misdiagnosed as MMN or ALS.
Do keep track of what brand of IVIg they're giving you as well as your dose in grams per kilogram bodyweight. That's a standard subject of conversation around here.
You mention your HMO. I recently moved and had to switch to an HMO and all of a sudden find myself bereft of coverage. However, I am persevering; if I can get my Utah neurologist to "sponsor" me to the Mayo, which I guess is sort of like a referral, the insurance company may grant an exception (all I want is for them to cover my $250 annual visit, I don't have any treatments or tests at the Mayo any more, treatments would get done locally). I don't envision this being impossible since no one in Utah was familiar with MMN and my Utah doctor was thrilled that I got into the Mayo. But right now there's a little hitch because they can't find my records… Such is life.
I would just urge you to read as much of the forum as you can possibly do. There is a wealth of information here, including links to scientific studies, such as they are.
Thanks for the "very" helpful information. Yes, I know what you meant about the postings - I was just frustrated and venting.because what I got typed just disappeared, so sorry!!
Also, not knowing what is going on in my body is frustrating too, and scary because I was so healthy and active one day then like another person the next. Gr-r-r-r. It's hard not know what to call the disease because it sounds like ALS and MNN are very similar. Haven't heard of CIPD so will look that up when I finish here. It is somewhat comforting to know I'm not the only person out here that is "at sea" (so to speak!) as well. I'm looking for a group locally that I can connect with as well since I think it's good to share experiences face to face.
Well, took a little break to look up CIDP which I found very interesting especially since I had a Laparoscopic Hysterectomy w year ago January. While the surgery seems successful I came out of it with recurring UTI's and was told the "recurring part could be due to the bacteria colonizing. So I just emailed my Neurologist asking if this could have been the starting point of whatever I have. I'm sure he read my medical history but don't remember him mentioning the CIDP, just ALS then MMN. I'll be interested in hearing his response especially since I had been so healthy and active prior
Thank you for thinking to put this forum together and keep it going!!!
Golfergirl in CA
While the surgery seems successful I came out of it with recurring UTI's and was told the "recurring part could be due to the bacteria colonizing. So I just emailed my Neurologist asking if this could have been the starting point of whatever I have.
Don't get your hopes up. Nobody knows what causes this. There is even a forum topic where people can speculate on what may have set their MMN off.
Everyone is aware of the ballooning cancer, obesity, and diabetes epidemics. Less well-known is the fact that autoimmune diseases are also on the rise. We are part of that rising tide. I have my own ideas about the cause of all this; there's definitely something in our current and recent culture that is toxic to the human body, which responds to toxic stresses and insults in a variety of ways (no doubt influenced by genetics). Rather than pinpointing a specific cause, I believe the best thing we can do is live the healthiest, cleanest lifestyle we can. Improving our general health can only help with our particular unicorn problem.
Of course there is disagreement about what is "healthy"!
When a mosquito lands on us we are sometimes fortunate enough to swat it off before it bites us. Sometimes it bites us then we swat it and eliminate it. Either way, we are that mosquito and Mother Earth is starting to swat at us. There are many problems evolving on the face of this Earth; number one is human beings. We are simply an experiment run amok and our petri dish is being readied for the toxic waste container...ah...I do love being off my anti-depressants, I feel so.....alive.
Hello Guy and Twitch,
I love the dark humor. Gotta' have a sense of humor, if nothing else!! :) :) Checked w/my Neuro guy and he told me I didn't have that CIDP. Yes, that was definitely disappointing. Sure did sound hopeful though because everything seemed to fit - just to good to be that simple!! He said the markers were wrong. So, pushing forward again. Am needing some help at home now and that's disturbing for me but guess that's normal? Haven't read any posts that talk about that or if there are people needing to go into a health care facility of some sort. Just don't know what to plan for but always will hope for the best!!
Oh, my dosage etc for IVIG is: 2 bottles 400 ml ea. Flebogamma DIF Immono Globulin Human (lgG) 5%IV premix 20 g. every three weeks. Don't know if that's a lot, average or a little amount of antibodies.
Thank you for your feedback, it's much appreciated.
GGPosted 9 months ago #
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