Friday, December 14, 2007

Monomelic amyotrophy-tastic!!!

Run Blog runners, I need your assistance.

I was recently diagnosed with a lovely little condition called monomelic amyotrophy. It's basically like ALS of my left arm. You can find all the particulars on Wiki.

I learned from my wife's friend's husband (who is an MD, Neurologist & PHD) that fewer than 200,000 Americans have this. That puts the total number of cases in Minnesota at around 1,500 if my arithmetic is correct. The odds of getting this around 1 in 10,000,000. I'm one in ten million! Woot!

Long story short; there is like, zero info online about how to deal with this. If you know a physical therapist who has heard of this mamma-jamma, send 'em my way. If'n you have this condition too, I want to hear from you. We'll start a band. We'll be called "Bring Out the Gimp" or possibly "D-Squad" (the D is for disabled) and we'll play either punk or metal. It's going to rock. I'm already working on album cover art.

Aside from now-tricky activities like opening jars, tying shoes & buttoning shirts - I plan to keep as active as I have been for the previous 29 years. So, I'm welcoming all suggestions for affixing my hand to bike handlebars (road, tri and mountain) ski poles (classic & skate), and maintaining my swim technique. I'm guessing there will be lots of velcro & rubber bands in my sporting future.

The good news is that my running remains unaffected...as long as aid stations in longer events are always on the right side of the street. I'm grabbing nothing left handed. Oh, and as long as my shoes don't come untied during a race.

42 comments:

Dustinsmom said...

I love your spirit and your sense of humor toward this wonderful little affliction. I don't have monomelic amyotrophy however I walked through the diagnosis with my son almost 5 years ago when he was 20. He's now almost 25. I'm going to pass your blog along to him and maybe you two can hook up and chat about things you'll both totally relate to. He's in the Seattle area, patient at the Univ. Of Washington, and there isn't anyone else diagnosed with this condition in our area that we know of.
I'll keep you posted if I come up with anything that may be helpful for you as well. I wish you the best! Keep up the great attitude and best of luck in all your endeavors.
Kind regards,
Dustinsmom

Heatherj said...

I have run into the same problem -- little to no information. My 34 year old boyfriend has been having problems with weakness in his left hand and arm. He saw a second neurologist last fall (the first one indicated that he needed to do strengthening exercises), who indicated that the cause of the weakness could be either monomelic amyotrophy or ALS -- but there is no way of knowing until you see the progression. I have found lots on ALS, but very little on monomelic amyotrophy. Please let me know if you find any good resources. He has been having problems with this hand for four or five years now, and has fasciculations in both his right and left arms and shoulders. We are going in for a second EMG (yuck) this week.

colin said...

I think it's just crazy that people are looking for info on monomelic amyotrophy & finding my run blog. I'm now blogging about MA over here. Hopefully I can provide an answer or two to someone.

Anonymous said...

just found out today that i have monomelic amyotrophy. same scnario person thought it was ALS got alarmed and when i told him ive had the hand issue since 13 he was relived cuz otherwise i woulda been dead due to ALS.....

Chris said...

I just came across your blog looking for info on MMA. I too have bad muscle atrophy in my left hand and forearm, but my doctor diagnosed me with Neurogenic Thoracic Outlet Syndrome. Has anyone ever mentioned that to you? While doing research for it, I came across MMA and wonder now if maybe I have that. The symptoms are identical only Neuro-TOS might have a solution. Plus it's more common in America since MMA seems like an affliction focused in Asia. Just thought I'd throw my two cents in. Oh and I think "Bring Out the Gimp" is a kick-ass name! I'm on board, though I don't play an instrument...maybe I'll take up piano haha.

msbif said...

My 31 year old son was just diagnosed with monomelic amyotrophy that affects his left calf muscle. We are not asian, but as a vegan for about ten years he may share a similar diet, including a lot of soy. I've always been concerned that his diet supplies enough nutrients for a guy 6 feet 4 inches tall. I'm just wondering if anyone else with this disorder has an unusual diet.

Amber said...

I was recently diagnosed with Monomelic amyatrophy except I have even more rare case that it's in my leg. My left calf has widdled away to nothing which has gave way to the muscles in my feet. At 32 I'm limping more often than walking. Try reaching for something on a high shelf when you can't go on your toes, walking up stairs is not an option and down is a knee blow out waiting to happen. I feel your humor in the situation and have named my shin bone of a calf brenda. When I trip and fall I blame Brenda, when I have trouble going up stairs I chew out Brenda. My friends now laugh and make comments to Brenda when I trip which is often. Hey when life gives you lemons make lemonade!!

Amber said...

I was recently diagnosed with Monomelic amyatrophy except I have even more rare case that it's in my leg. My left calf has widdled away to nothing which has gave way to the muscles in my feet. At 32 I'm limping more often than walking. Try reaching for something on a high shelf when you can't go on your toes, walking up stairs is not an option and down is a knee blow out waiting to happen. I feel your humor in the situation and have named my shin bone of a calf brenda. When I trip and fall I blame Brenda, when I have trouble going up stairs I chew out Brenda. My friends now laugh and make comments to Brenda when I trip which is often. Hey when life gives you lemons make lemonade!!

Sivakumar said...
This comment has been removed by the author.
j said...

I am a 37 yr old white caucasian male with MMA in my lower right leg. I was diagnosed at age 21. I will soon create a blog about my journey with this disease from the start for everyone's thirst for information. Unfortunately I offer no solutions from the years of diagnostics and fourth opinions. However, I do have insight to a cause. My question to all of you is:
Do you have a known parent that was exposed to radiation? The most known cases are male and are in U.S., Japan, Pakistan and India. The exposure of nuclear radiation effects the offspring of U.S. soldiers and victims of nuclear weapons testing in Pakistan and India, the nuclear attacks on Nagasaki and Hiroshima, and U.S. soldiers close proximity to testing the weapons. My dad served in the Navy in Korea where his crew only tested nuclear weapons in the pacific ocean. So does anybody else have a similar story? For what it's worth.

Steve said...

Same boat here--right calf wasting away. Few answers from 3 neurologists, they won't diagnose what I have yet as they don't know if it has stabilized even though I've now had it for 4 years and it doesn't seem to have gotten any worse the last 2. Causes a slight limp and stairs can be challenging and I run like a wounded duck. Went to rehab for 6 weeks and my calf schrunk 2 cm's which freaked out the therapist. I'm 60 now and as I saw 3 little kids in wheelchairs that will never walk or stand vertical at rehab, I guess I'm happy if this is as bad as it gets. Good luck to all of you. No nuclear exposure but did take industrial xrays for about 3 years, but no accidents for over exposure

Steve (The Gimp)

kbryan said...

My 16 yr old dtr was diagnosed with MMA after almost 2 years of going to multiple doctors and having thousands dollars of tests done. She has atrophy in both hands and both feet. She has loss of motor skills in both hands, all of this is symetrical. She has loss of balance, couldn't walk on her heels at all, foot drop, she had to have a friend pull around a lap top for her at school because she couldn't write, she wore sweat pants, cause she couldn't button her jeans, etc... After a year of OT and PT she has about 85% of her motor skills back, her balance is great, her strength still sucks but it's good enough. The doctors say she shouldn't have any real trouble again until she gets old. She even to start driving in a couple of weeks. It's hard but if a 13 year old can go through everything she did anyone can!

j said...

Dusitnsmom,

Feel free to reach me at halfcalf72@gmail.com.

I lived in Seattle for 6 years and now live in Portland, OR. I have lower leg muscle wasting too. I'd be happy to give you any details I can to share.

Anonymous said...

Hi, i think i have a half brother (who i don't really consider to be half but full)and i think he has what you have, the doctors told him he had ALS and he had only two years to live i haven't seen my brother for at least 8yrs and have only had an email about 3yrs ago, this email address has been terminated i would like to know more about this disease as well, if anyone has any ideas on how i can find my brother other then using facebook i'd really appreciate it i hope other things in your life are better.

Gail said...

My 18 year old grandson was recently diagnosed with the same condition. It is affecting his left hand at this point. We are waiting for an appt with a neuromuscular doc but I spoke with a naturopathic neurologist who is doing research into environmental causes of diseases like this and ALS. Your original post was in 2007. Has it stabilized yet? Sounds like you have a great sense of humor. So does my grandson - he's the comedian in the family.

Anonymous said...

Greetings MA sufferers & their family and friends:

I agree with what has been said in prior posts - finding concrete info on MA is extremely difficult. I'm glad to have found this forum and I hope to contribute as much useful information as possible.

I'm a 43-yr old male and I will supposedly know whether I have MA by the end of this week. A little background. I had a total right hip replacement in 1998 and in 2007 began experiencing weakness and atrophy (and sometimes fairly intense pain when I slipped or sneezed) in my *upper* right thigh. Like a big dummy, I let it go until this year. In February, my ortho doc did my annual x-ray checkup on the hip and the prosthesis was fine. I told him about the weakness and he ordered physical therapy and, if that didn't help, a visit to a neurologist. Well, 3 months of PT didn't help and so off I went to the neurologist 3 weeks ago. I had an EMG, which was clear, but my doc said that a dormant form of MA can bypass EMG detection and only be detected by a brain MRI and/or an MRI of the cervical spine. The brain MRI came back clean last week so tonight it's spine MRI time. I'll let you all know. Thanks...

Anonymous said...

An update from my Aug 2 post above:

Had both cervical *and* lumbar spine MRIs and those aren't the problem either. Plus they took blood to check for a muscle enzyme deficiency, which came back negative. So right now I'm sitting with a clinical diagnosis of MMA from the neurologist.

I went back to my ortho doc yesterday and, like everyone else, he's a bit stumped. From an x-ray, my prosthesis *itself* still looks fine. He said I don't really fit the categories for the weakness to be wear particle (from the prosthesis) related, but he ordered a CT scan just to be sure something like a mass or lesion wasn't hiding in there. I'm having the CT scan tomorrow.

The doc said that a wear particle-related muscular problem is usually accompanied by relatively severe groin and rear-end pain, lysis of the femur, or a feeling that the prosthesis is dislodged - none of which are the case with me.

So if the CT scan is clear, then the neurologist's diagnosis of MMA is pretty much all there is left.

Anonymous said...

Does anyone know how a diagnosis of ALS is ruled out and it's determined that it's MMA for sure?

Anonymous said...

If it's ALS or MS, evidence will appear on an EMG nerve test and/or a brain MRI. Plus, MMA affects only one limb and does not spread.

sonya said...

My son was recently diagnosed with MMA. He has muschle degeneration and weakness in his right hand. When we went in for his EMG test they discovered that it his left arm also showed abnormal nerve messages which was very disheartening to hear. Seeing another specialist this week. Trying not to freak out. He is 19 years old. Just got back from Korea playing in a worship band so maybe he would be interested in your band. Thanks for your humor. I'm a parent searching for answers.

Edward said...

Hi Sonja:

Have they done a brain MRI to rule out ALS, MS or some other PMD (progressive muscular disease)? Generally that's the protocol because a diagnosis of MMA is usually not made until those other things are ruled out. Plus, as you know, MMA only affects one limb.

Hard as it may be, don't freak out. You're doing the right thing in getting a second opinion. This is a tricky area and you need to make sure they nail down *exactly* what is afflicting your son. Don't accept anything less and please keep us posted.

Anonymous said...

In 2002 when I was 31 I watched my right calf atrophy and I did not go to a Dr. Our hockey team had just been knocked out of Nationals 2003- and after the game my brother insisted that I go to the Dr. and get my right "wheel" checked. When I first went to my family Dr. he saw the atrophy and I was fast tracked in for tests (no waiting in the supposed Alberta health care lines for any of my tests). For a year or so I did all the tests a multiple EMG's, CAT Scan, MRI all good. Nerve conduction tests are about as much fun as -50 degree windchill in January. While I do have a "dead zone" in right calf- I do not have ALS or MS- what was challenging about that year was knowing that all the tests I was having were to rule out ALS- I never thought I had ALS. I was living beside a young man with ALS (that has passed away) and I new for sure that I did not have what he had. In 2004 I was working in China and used to go for daily Reflexology and Massage and I think it really helped. My gate when I walk is not the same as before - but I get around fine- Cole Hahn Nike Air shoes have been a savior. It is not the same but I still play hockey and once or twice a year I run with my wife, just to prove to myself I can still run. Here is my challenge with MMA - is that there is no understanding of the disease and therefore there is no treatment for some of the problems I live with everyday- it is like we are supposed to be content and happy that we are alive, but that is where the treatment stops.... First is the Pain problem. I have read that with MMA there is no pain. Well if that is the case then maybe I don't have MMA- because my calf feels like the cramp/burn that most people can only experience if they just did 30 calf presses- the cramping exhausts me. Second, Progression of MMA, I have read that MMA does not progress,- again this not my experience. In 2006 I start to experience the cramping and pain in my quad above my knee- similar to what happened to my calf in 2002- there has been moderate atrophy,- as of today- the cramping and pain has progressed in my upper right upper quad. My right hamstring is now in a "cramp"- feels like I am in a permanent hamstring stretch. Anyways, so I went to the Dr. and was prescribed pain killers (which I tried but will not take again unless I can not stand the pain). I have tried a parasympathetic nerve block and while it works -going for the procedure every 60-90 days is not something I want to do for the next 30 years. Does anybody else experience this cramping and pain in and around the affected area? Any treatment that has helped you? As I sit here today "the post" as my right leg is affectionately known is not what it used to be- my quality of life due to the pain and cramping is a daily stress- but it is great to be alive,,,,!

Edward said...

Did your neurologist ever mention that a lumbosacral radiculoplexus neuropathy (LSRPN) may be the problem? This is the last thing my neurologist considered before settling on MMA for me. LRPN is common in diabetics but can also occur in non-diabetics and is often accompanied by pain - which sets it apart from MMA.

My issue is mainly weakness/atrophy in the upper thigh, and I can encounter pain there if I slip on ice or make a bad misstep - but the pain doesn't last long. So the main reason LSRPN was ruled out for me is because the pain is neither debilitating nor constant.

It sounds like like your pain issue is much worse, so LSRPN may be a possibility. Let us know.

Anonymous said...

I am in for my 2 year with my Neurologist and will ask him about LSRPN. It is like the Docs think oh great it is not "ALS" so you are fine. If you have a limb that atrophied there is/was a problem and if it affects your life long term it is a disability.

Edward said...

I saw 2 neurologists about my condition - the original one pretty much insisted I get a second opinion due to MMA being so rare. But neither of them have ever had a "it's not ALS or MS, so you're fine" attitude. They were more *relieved* that I didn't have those diseases, but also frustrated that there is know no treatment or cure for MMA.

Do some research on LSRPN before you see your doc, as I've found that educating myself on any possibility is helpful.

One thing I didn't mention about LSRPN in my previous post is that, unlike MMA, there is a possibility of alleviation. Unfortunately though, that usually involves high doses of IV steroid treatments over several months. See what your doc says. LSRPN may not even be your issue, but it's best to be sure.

Anonymous said...

Hey MDRA, are you still looking for fellow MMA groupies? I'm a 36-year-old non-Asian female who has had it since I was 19. It affects both my arms, but mainly my left (and I'm left-handed, dang-it!).
I am very affected by the cold, and since I live in Ontario, just north of the Michigan border, I am further disabled from Oct.-Apr.
My next big challenge is dealing with my first baby. I told my husband I'd carry it for the first nine months, then he's got to do the carrying!
I think one of the symptoms of this condition is a sense of humour and an "amyotrophy-tastic" attitude.
Anyway, how can a person get in touch with you, without just blogging a response? I've never blogged before....

Anonymous said...

I have MMA (O'Sullivan-McLeod) of the right arm, dx'd ten years ago. It's pretty stable but it's getting really hard to find a job. I'm not exactly disabled, but pretty much anything that requires lifting or raising the arm over shoulder level is out. I've worked forever (I'm 44) but it would be really nice to get a piece of paper saying "hey, dude has weird unusual disease, please work around the gimpy arm" so that companies would be all "sounds great" instead of "um, did you know your arm doesn't work and plus, it looks weird?"

I don't know anyone else with MMA. We spent three years in doctor's offices where they went "Huh. That's weird." Finally ended up at Barnes in St. Louis, got the diagnosis, and now I pretty much live with it. No big deal. My Halo guy even has a bionic arm. I named it Gimpy. Awesome. :)

Anonymous said...

I was diagnosed with this also -- after reading about it, I realized that as a woman in her 50s with no Japanese or Indian blood, that it was unlikely that I actually had monomellic amyotrophy. However, formal diagnosis of ALS requires the disease to have progressed quite a bit more than mine has, with the involvement of three limbs. I suppose when things progress, my diagnosis will change. My grandmother died of ALS. The good news is that this was almost two years ago and not much has happened since. I did some reading: I take 5mg of sublingual B12 every day so now my blood level for B12 is above the top of the measurable range at the lab. I also take glutathione and glutathione precursors, and GABA (to work against excitotoxins that damage nerves.) I also avoid glutamates, e.g. MSG, etc. I can't say for sure that this is why I haven't gotten worse, but I am pleased with the results.

m423 said...

Hi I have been diagnosed with monomelic amyotrophy. It has been three years now. Original dx was multifocal motor neuropathy, did ivig nothing changed. I'm able to function but might be able to offer people with this situation some hope, I am currently in md school and hope to study this later on. Best of luck to all!

Edward said...

m423 - what limb(s) is/are affected?

m423 said...

Left hand and left wrist- occasional tricep twitch

Anonymous said...

Had it for 30 years. Slight limp. It was first postulated in India and Japan so that's where the rare in U.S. comes from. Still swim and body surf and hike long distances. Vegan, radiation, or whatever it does not matter since it won't disable or kill. I thank God it was not ALS every day. Go forth and enjoy life.

Anonymous said...

34 year old male, phoenix, az. Currently trying to figure out what's going on with my right hand. About a year ago I noticed consistent weakness in my right hand & arm while working out at the gym. 6 months ago starting seeking answers, been bounced around alot since then, diagnosed with carpal tunnel, then referred to hand specialist who said it's not carpal tunnel syndrome, and has now referred me to a neurologist to eliminate it being "motor nerve disease" after googling that I've arrived at this page.....I too have consistent twitching in one limb & significant hand atrophy/weakness. This presents a problem as I am a mechanic and my hands support my family. Is there anything specific that I should ask/tell the neurologist when I meet them? I really want a correct diagnosis...

Edward said...

Start off by telling him that you are familiar with the disease. I assume that he will at least want to do an EMG, which is fine - but hopefully you can avoid a battery of MRIs and CT scans. MMA is generally a diagnosis of last resort, so those tests may be necessary, but at least your neurologist will know you're aware of the possibility that you're suffering from MMA.

Mark Lawson said...

Hello from Sydney, Australia. I have been having problems with my right leg for about 7 years now. In the last two months I was diagnosed with MMA. There seems to be a lot of information on the net now about the condition, but like most of the stuff on the internet, its either too scary or not terribly relevant. I like the idea of the band - I'm learning guitar at the moment, so unless Slash or Richie Sambora comes down with MMA, pencil me in for lead, electric guitar. I need a few years to get half-decent though.

Anonymous said...

Hi My Neurologist suspects I have MA- last year my left hand cramped fairly frequently, this year there is weakness and muscle atrophy especially between my thumb and index finger. I also have fasciculations in both feet but no other symptoms in any other limb. Just wondering whether any of you have fasciculations.

Rebecca Stahl said...

I am a 24 year old, Euro-American female. I was diagnosed with MMA when I was 18, after having a multifocal motor neuropathy diagnosis. Interesting to read how everyone is slightly different from each other. I have weakness in both hands and wrists, but it is worse on my right hand (and unfortunately am right handed). My atrophy seems to continue to progress, and hasn't hot the 2-3 year plateau many doctors and websites have spoken of. Only suggestion i have is don't do a google image search! It is terrifying.

My hands look funny and there is much that is very difficult and frustrating to do. I actually find one of the most difficult things is that people dont see me as disabled, and don't get why i hold the pen funny, or can't open a jar or zip my jacket. It's been very hard for me physically and emotionally, and I am looking to connect with people who are at any stage of this diagnosis. Email me at gotmmaquestions@gmail.com.

Looking forward to sharing my strength and learning from yours!

Rebecca Stahl said...
This comment has been removed by the author.
Rebecca Stahl said...

After searching a bit more, I was very sad to discover that a few days ago, Nov 12, Colin Farbotco died from ALS. His blog is delightful to read, and I am very sad to learn of the passing of this man I did not even know,

http://colinfarbotko.blogspot.com/

OwwEssMee said...

hi . i am male ,19 , from Srinagar Kashmir . . i had some complications while taking food , writing and doing daily activities , i was diagnosed with MMA in 2012 after conducting all necessary tests , , wanna ask you if anyone among you is having burning sensation in the affected hand , ,or do you feel it hard to clutch pen and write for more than 15 minutes ??? , hell ya , i'm suffering . plz feed back @ mir.owais2007@gmail.com

Mike Huff said...

Thanks be to God for sending me a deliverer who cured my Amyotrophic lateral sclerosis (ALS) i lived with this virus for 3 years without a cure, i lost strength and i became weak i tried all possible means to get cured but they failed,all my hope was lost, i thought i would die soon, i searched for natural remedies and i found a lot of people who where cured by Dr Harrison so i contacted him and he gave me hope and prepare his herbal medicine which i took for 8 days as instructed and to my greatest surprise i was cured using his herbal product. am the happy, i cant believe i could be healed again. please contact him via email if you are having ALS dieases his email is SACREDSPELLTEMPLE@HOTMAIL.COM or add him on whats app +2348079540032. contact me for more information huffmike7@gmail.com or call me 1 954 327 8869

Francesca Mcniel said...

As a sign of gratitude for how my husband was saved from the dreaded ALS, i decided to reach out to those still suffering from this.
My husband was diagnosed of ALS in 2013 and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, he had difficulty swallowing, all his joints were dead and that made him immobile to mention but a few. we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony by someone who was cured and he left the contact of the doctor who had the cure in 2015. I never imagined ALS has a cure not until i contacted him and he assured me my husband will be fine. I got the herbal medication he recommended and my husband used it and in three months he was fully okay even up till this moment he is so full of life. ALS has a cure and it is a herbal cure contact the doctor for more info on josephalberteo@gmail.com on how to get the medication. Thanks for reading my story.