Hirayama's Disease

[wastingaway]

i've recently been diagnosed with Hirayama's Disease and am working on getting my insurance to approve the rest of the appointments i need before surgery..the doctors still want to do one more test before the surgery to make sure it is indeed Hirayama's Disease...i have been trying to get this solved for a year now, longer if you count when i first went to my family doctor about it and he told me it was normal..my hands have slowly been wasting away on me, my left more so than my right. i still have a decent amount of grip in my right hand, but my left hand is that of a small child's. however i am starting to notice my right hand beginning to waste away too. let me tell you, you never realize how important your hands are in everyday life until you cant do things that you use to be able to...

the surgery that my surgeon talked about was more or less to rotor router my spinal cavity in my neck to make room for everything. i was just wondering if anyone has ever had this surgery and if they were ever able to recover their grip and hand functions, my doctors would not give me a straight answer when i asked them. i think they are afraid to incase of a lawsuite, but all i want is hope...i am only 18 years old am quite nervous about the surgery and life after the surgery...i was hoping to be a pilot in the air force but i am afraid with my grip the way it is now there is little chance of that happening. if anyone could give me insight that would be great! thanks

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[charlize29]

Hi there,

Here is a case of Hirayama's disease (also known as Juvenile Muscular Atrophy of the Unilateral Upper Extremity )of a 16 year old boy who had undergone surgery. Cheer up and do not lose hope, things will be fine. Prior to your surgery, do some visualization & relaxation exercise. Goodluck to you and take care!!

Here's the link:http://www.ncbi.nlm.nih.gov/entrez/q...&dopt=Abstract

Regards,
Charlize29

[wastingaway]

hey guys,

i just wanted to reply because i have recieved a few emails over the last couple of months about this.

i did undergo my surgery and have been going to occupational therapy for the last 6 months or so. the doctor told me he thinks he solved the problem and i will give him some credit. before, my hands got tired very fast with any sort of activity. i couldn't even finish a song on guitar hero becaues of it. i can now play for quite some time with out them getting tired (maybe 30-45 minutes)...clumsy, but not tired which is odd because even my friends' hands get tired after a few songs. along with that improvement, i have also gained some muscle back on the outer pinky finger. im not sure of the name but my left hand has recovered some of it. don't get me wrong, it is by no means back to normal and my hands are still rather bony, but it is improvement none the less

unfortunately those are the only improvements i have noticed. at occupational therapy they do measurements every month or so and it shows my hands are still loosing strength, slowly but surely. i have lost almost all the muscle between my index finger and thumb in the left hand as well which makes it very hard for me to bend my index finger fully. my therapist is trying to e-stem it back. (i think this is how she got my muscle back on the outer pinky) i'm not sure how the e-stem really works but if it DOES work i will be one happy camper! also, i have developed a twitch in my left forearm that comes and goes, i am hoping it is a sign of muscle growth however though i believe my grip strength last time was 4 pounds in the left hand and 25 in the right.

besides that not much is new. im stilll hopin things get better but in the meanwhile ive been tryin to live life to the fullest and get the most out of it. it is rather depressing when you have no control over your body, but i think the best thing to do is try to continue living. ive probably done more fun, crazy things in the past 6 months or so than ive ever done. you just have to try to stay positive

i wish everyong the best of luck and i hope you guys had a good new years! also if anyone has anything theyd like to share feel free to post. there really isnt too much information on this on the internet and a lot more people are effected by it than i realized.

[HandShake]

Hello WastingAway,

Hang in there buddy. I've had Hirayama's for about 17 years now. It started when I was 15 and I went to all the top neurologists in New York. They gave me every test imaginable and then gave me & my Mom blank stares and the obscene bill. No one knew it was Hirayama's. I only know that's what it is now because there is a fair bit of data on the web recently.

I have it in my right hand. I'm glad to hear your condition has improved. Even if it's only a little bit, that is incredible. I've been stable for at least 12 years now. It may have gotten worse recently after moving and a lot of heavy lifting, but I'm not sure yet because it periodically gets weaker than normal and then VERY SLOWLY returns to... Normal weakness. LOL. I can't write for very long and I have to hold a pen in a very strange way. My hand is pretty weak. I can hold a light bag of groceries for about 3 blocks before I have to switch hands and give my right a rest. Eating is kind of difficult. When cutting food (like steak), I have to hold a knife like I'm gonna stab somebody "Phycho" style and it makes me look like I have no manners. Or like I'm a 5 year old.
I can however mouse and work on the computer for as long as anyone else. =) Thank God for the modern age! PSP or any other kind of 6+ button controller gaming is out for me which reaaaallly sucks. But thankfully Nintendo Wii is out there. =p

I can bend my fingers and make a fist, but my index & pinky dont bend all the way in. Some things I've tried which have a positive result include accupuncture and shiatsu deep tissue massage. Sadly, the results only last a day perhaps and then it's back to "normal". I always wonder if constant massage will help, but I can never afford it.

My hand gets a hell of a lot weaker in the cold to the point of almost being unusable. But then again, my left hand gets weaker in the cold too, so I guess it's just an exagerrated malaise in my right.

I lift weights and work out so that at least the rest of me is strong. I've found that my atrophy actually extends to my right tricep as well, but not enough to be noticable. The tricep is still strong enough for me to work it out more than the other to acheive some kind of symetry.
I've found that though the disease only affects my right hand and forearm, there are many smaller things wrong with me that are all on the right side. For example, my right shoulder used to dislocate A LOT and I had to have surgery to keep it in the socket (it popped out painfully during sneezes and once while I was getting a blowjob - Not Cool!). I also injured my right ankle and it's been funky ever since. So while these things aren't technically connected to the Hirayama disease, I wonder sometimes if my left brain just hates itself! Or at least the side of the body it's responsible for.

All in all it hasn't really gotten in the way of my daily life, but you can get used to a lot of things I suppose. The ONE thing I would give up 10 years of my life for is to be able to shake someone's hand with a good firm grip. As it stands, I have to shake with both hands (so at least I can apply pressure with my left) and many people notice right away that something is wrong wit my right and I lose a lot of first impression points. Especially since nothing seems wrong until that moment. The look in people's eyes when they realize always cuts me to the core. That is the one thing I've never gotten used to...

So I periodically check on Google to see if some brilliant surgeon has figured out some breakthrough procedure so that I can give a good firm handshake again.

I often wonder why God gave me this affliction. I was once friends with a really great girl who suffered in her youth from polio which made her left leg weak. I forced her to walk with me everyday for years until her leg became strong and her limp turned into the sexiest hip-swaying strut. When we started, she could only muster 4 blocks. Now she does 3-4 miles no problem. When I was friends with her, it seemed to give my disability a purpose. She couldn't pull the "you don't understand" card on me and thus I was able to help her strengthen. Now we are no longer friends and I'm back to having no reason for this thing...

Anyway, that's been my experience for what it's worth.
If you have any questions (as weird or mundane as you want), feel free to email me. I think it is ultra-cool that you got surgery and have physical therapists helping you regain your strength - and that your doctors gave you some sort of solution. Rock on Brother. Rock on.

[canada]

Hey guys

I was diagnosed with monomelic amyotrophy aka. Hirayama's disease in 2003 and have now been going for 5 years or so. Unfortunately it affects both my hands, left much worse than the right, so that I also cannot play video games anymore hahah. Typing is manageable, but I find small everyday tasks a pain: ie. doing up buttons, shoe laces - notice that?

The thing that bothers me the most, besides the handshake like you pointed out, is that I can't play hockey or golf with my friends anymore... what I would give to for some sports again.

I've just recently been in touch with some doctor's at the Mayo Clinic in the US and hopefully will fly down there soon to get re-evaluated. I've read a few reports about mis-diagnosis and wondered if I may be lucky enough as well.

As to the post above about the surgery - how are you doing now? What did they do?

[jonathan_PTRP]

A Case of Hirayama's Disease Successfully Treated by Anterior Cervical Decompression and Fusion.

try to read this article HIRAYAMA's DISEASE..

[uncwnelson]

Hey guys, I am trying to find some answers and maybe some help for my brother. He has been battling something along these same lines for a couple years now (longer if you count first signs of weakness). I am not a doctor nor do I know what the test results are etc when he went to the doctor, so I am going to tell you some of the observatins I have made and maybe someone can help us out. My brother is 21 and has been complaining of reduced hand strength since he was 17 or 18, like some of you he first started noticing a lack of grip strength when squeezing or shaking hands. He now has lost much of his muscle tissue and seems to hold his hands with his index fingers constantly pulled in toward the palm. He has definetly been slowed by this in terms of movements in the fingers and arms. Not only are both of his hands affected but also his legs. He has trouble walking and seems to not be able to lift his feet more than a few inches off the ground and slides them when he walks. The way he walks seems to be something he has to constantly think about, for example it seems that he is thinking to himself the whole time, "lift leg, move leg forward, put leg down". Its a jerky process at best, I noticed that none of you guys have said anything about your walking but I was wondering if anyone else has any of these troubles. Please understand my frustrations and provide any help or info you think might help. We have been to Duke and UVA and received no answers, so if you can suggest doctors or anything like that I will greatly appreciate that too. I will thank you in advance as I am sure all of you know the frustrations he is going through.

[HandShake]

What you describe is not Hirayama's disease. Hirayama only affects the hands as far as I know (from online research). Generally it only affects one hand, though a lesser effect can sometimes hit both hands. Legs are not part of this particular disease. What your brother has seems to be something else. I can't say much more, but hopefully closing this door will allow you to search for the true answer. I pray your brother gets through this with a recovery.

[wastingaway]

uncw,
i have read something similar to what your brother is going through online. i do not think it is hirayama's though. i forget what they called it. i will try to find the link again and post it up hopefully within the next couple of days.

also has anyone found any good excercises to do to help? my forearms are looking scraggly as well ive noticed, but nothing i do seems to help. i think this winter did a number on me. riding season is coming up, but sadly i think it will turn out to be my last. i will have to try to make the best of it i guess. hmmfff

[wastingaway]

i couldnt find the actual link that i was looking for, but i came up with this. i remember when i DID find the website talking about somethng that sounded similar to what your brother has i was looking up ways to reverse atrophy.

What is Spinal Muscular Atrophy?

here's the link. it's mostly about sma, which is similar to what were going througha nd possibly your brother. i will continue to try to find the link to the site i originally thought sounded a lot like your brother, however the more i thought about it i really hope the site i meant to post is not what your brother has. in it, it talked about how the lower and upper extremities atrophied and after a while it progressed to more vital muscles like the lung and heart. it was quite scary to read about because after i read it i started looking for more signs of wasting on my own body.

i am going to get a flight physical soon to see if i will be able to fly afterall. the more the atrophy progesses the more worried i get that i am going to college for nothing. i keep trying to do stuff to build the muscle back but nothing seems to work. my body does not want to cooperate, its very frustrating. i wonder if when it stops like they say it does, or IF it ever stops, if i will then be able to rebuild the muscle. i think the worst part is juST waiting to see what will happen. i'm still trying to live life to the fullest, but whenever it hink about the future its full of questions. thats why its better to just live for NOW and think about the rest later.

[josephblayil]

Hi All,

I am 25 now and have been diagnosd as a Hirayama patient @ 21.

I did some ayurvedic treatment in India and it was not very bad I would say. I didn't loose any muscle after that for 2 years while doing the treatment

But now me in USA and in this this cold climate here i'm having lot of issues.

My ring finger, baby finger and area between thumb and index finger are mostly affected.

i' doing lot of exercise, weight lifting and all, but nothing seems to help.

I just want to make sure from you guys, what are the best practises to be folowed?

Like can I do weight exercise, is it good if do some phisiotherapy??

Your inputs are greatly appreaciated,

Thanks
Joseph

[wastingaway]

hi joseph,

i PERSONALLY have found winter to be the period in which my hands do most of their deteriating. im not sure what it is about the cold but my hands hate it with a passion. i had my surgery last summer and afterward i started to regain small bits of strength only to loose it PLUS more during the winter. i ride motorcycles so maybe the constant riding during the summer helps condition the muscles. ive had this disease for about 3 years now with no sign of it subsiding..i use a neuro stimulator to try to help but im not really sure how effective it is. i guess my only advice is to try to keep your hands as warm as possible, i know this sounds obvious but if your hands are like mine the cold can really take a number on them.

also a side note, this site underwent maintenance a few months ago and afterward 2 posts were missing on this thread. one from a guy who is studying neurology who was also inflicted with this disease and one from me giving a website that talked about similair symptoms of somebody's brother from a post above. if you did not get to see the link before the 2 posts dissappeared let me know and i will try to find it again.

good luck guys, i hope one of us finds a way to beat this...until then keep livin and enjoy life!

[wastingaway]

also, i think above you asked if physical therapy was a good idea. ive been going to it every week for a little over a year now. while mosts of the stuff you can do on your own, they DO help you come up with exercises to target certain hand muscles whichi s nice because i would not think of some of the things myself. i dont know, ive kind of just adapted to the condtion. even though my finger strength is weak i can still do MOST of the things i use to..i just do them a little different..for instance i shift goofy on my bike because i cant use my finger strength to pull the clutch lever in. once it is in though i can hold it with my finger strength, its weird actually now that i think about it. id say if u still have enough strength to lift weights you should. i use to love working out. i was never a huge guy, but my friend and i lifted every day trying to be lol. i stopped lifting though after a while because i was afraid id hurt myself. i dont really trust my hands like i use to haha

[josephblayil]

Thanks guys for the quick resposes.

So that means I have to be very careful during winter. My condition is not very bad now. But now i'm afraid of the winter here. Its my first year in US. The condition in India is entirely different. i will try to stay away from cold and use glouses.

Also if you can forward me those 2 missed out links that will be great. I joined the forum last day only.

But for the last 4-5 years i was feeling isolated kindof i'm the only one with his desease. Now that i found you guys i'm happy. that we can atleast share the Best practises and get know any updates on this in medicine.

Also one question. My understanding is that this deasese will stop @22-23 age and after that muscles wont wasten again. Is that correct? Anyone who has this desease for long time had the wastening got stopped atleast stable?

Wering a cervical collar will help only if you do that from 18-22. when you have the wastening goes on right? now that we dont need to wear that right?

Thanks again for your time.
Hope we will be able to see atleast one among us get rid of this and that will be the happiest moment for me.

Thank You
joseph

[josephblayil]

Hi guys,

Did any of you guys used heating pads or anything to increase blood circulation and did it help?

I'm planning buy one as winter is approaching.

Please advice

Thank You

[bbuttelmann]

I have recently found out that the problems I have been living with for most of my life are due to Hirayama's disease. I'm looking for people who have been treated, success and failure stories, and treatment centers with experience.

What I have read in this blog so far is partially encouraging; I just want to develop more facts. I'm REALLY glad (and sorry :-P ) to be able to contact others with the same problem.

Any comments / suggestions will be greatly appreciated.

[josephblayil]

Hi,
I'm 26 now. I have been diagnosed with this wen i was 20.

I have More wastage in right hand wrist and plam area. Near Left hand tricepts area as well.

I have been working working out quite consistently and was able to avoid further damage.

I always keep my hands warm...I'm doing small finger independent and palm exrecises.

Always be optimistic.. How old are you nw? Hows your hands now?

[ZeroReflex]

My son (15 years old) has recently (a.k.a today) been diagnosed with Hirayama's Disease. After reading your posts I'm concerned that he's been misdiagnosed.

His MRI shows a protruding disc in his neck which compresses his spinal cord when his neck is flexed. Symptoms prior to diagnosis included hand shakiness (can't use a pencil), uncontrolled twitching of all limbs, complete lack of reflexes in all limbs and a prior diagnosis of Developmental Coordination Disorder (DCD). No visible evidence of hand wasting, as of yet, though his shakiness has progressively worsened over the past 3 years.

Some of your posts suggest that only the hands are involved. Meanwhile, my son has all limbs affected. Also, from pictures I've seen in articles it's not usually a protruding disc, but rather a lesion, that causes the compression in Hirayama's disease. I'm not sure if that makes a difference or whether any compression in the neck area can lead to Hirayama's disease.

Current treatment suggestion is surgery and neck brace. The neurologist has referred us to a neurosurgeon and has scheduled EMG and muscle wasting tests. In the meantime my son has been advised to give up all sports (including climbing - his passion). We've been advised to mention his diagnosis if, for any reason, he has a neck jarring accident or needs to be put under by an anesthesiologist. Apparently he's a walking time bomb and the wrong motion could sever his spinal cord.

My son's a cool kid who absolutely refuses to wear a neck brace to school. I really feel for him. But, right now I'm finding it hard to reassure him.

I'm also wondering whether the car accident he was involved in, a few years ago, may have caused this. My son was in a pick-up truck with his father. They had a boat and trailer in tow and were waiting at a stop light. A van slammed into them at high speed pushing the boat into the cab of the truck and bending the trailer in half. The boat, trailer and truck were all written off in the accident. Meanwhile, father and son appeared to be uninjured. Perhaps we were wrong and it's taken us this long to discover that our son suffered a serious injury.

Does this sound like Hirayama's disease? If so, is this the usual course of treatment? It must be especially difficult to cope with a neck brace.

[josephblayil]

Whatever I'm saying is just based on my experience and i dono the technical stuffs.

I have seen aorund 3-4 guys with hiryama desease and all are affected with upper limbs only. Also for all of them the deasease started around 18-20 age. All of us had severe muscle watsage in palm and wrist area more.

Looking @ your post I dont feel it is hirayama.

But stilll it would good to keep away from sports and be in the neck brace for a while. Because reading ur description whenthe neck moves it can cause a wastage.
So be carful for sometime atleast till u get the surgery done.

Because if these get wastened then they may never be back.Thats wat happened to us. SO be careful for some time.

[bbuttelmann]

Thanks for the replies. Yes, warm hands helps. A warm climate helps a LOT. Does exercise help? No one knows. It can't hurt.

It is REALLY great to be able to connect with others that have similar experiences. I'm 71 and clearly the old guy in this group. I am going to post a pretty long set of experiences which I hope will be a sober encouragement to the rest of you.

I think we still need to identify some "centers of excellence", as they say in the medical field, where there is experience in diagnosing and treating Hirayama's disease. I WANT TO PLAY MY GUITAR AGAIN!

One point: Hirayama's and SMA (spinal muscular atrophy) are most likely different: SMA is known to be genetic and there is a genetic test. Google it. The Muscular Dystrophy sites have information. I don't think anyone knows exactly what Hirayama's is.

[bbuttelmann]

Living with Hirayama’s Disease.

I am posting this to encourage others. I hope it will help: For what it’s worth, here is my experience living with Hirayama’s disease. This disease is so rare that without the internet you probably feel like you are the only person in the world with your peculiar set of problems. If it will help you feel connected by reading this, read on. Be of good courage - You CAN lead an almost normal life.

As of October, 2008, I am 71 years old and have lived with what is most likely Hirayama’s disease since I was a teen, if not before. Other than the slow wasting away of my hands (right much more than left), I am in reasonably good health, have no known life-threatening illnesses and still live an average normal life. Up until the relatively recent occurrence of these blogs, I thought my condition was entirely unique and paid little attention to it, aside from the obvious ever-present problem of my right hand slowly becoming almost useless and my left recently beginning to lose some strength..

I think the first evidence that my hands were different happened around age 12: I had begun piano lessons about six months earlier, and my teacher was frustrated with the fact that I could not get the third finger on my right hand to play with any strength or control. She believed, and I accepted as true, that I was simply not trying hard enough or practicing well. The rest of my fingers were fine, and there was no noticeable muscle deterioration anywhere in my upper extremeties. After a few frustrating months of her yelling at me, I gave up the piano. Later, at about age 14, I noticed that in the winter I would lose control of my right pinky. Other than these two anomalies, I was your normal frustrated neurotic teenager.

During my childhood I was a standard active boy, played all the usual kid’s sports, and especially loved baseball, but could never handle a basketball well enough. I was a good runner and made a decent football running back and receiver – caught my share of touchdown passes – but couldn’t throw a pass. I am right-handed, in baseball was a good hitter and fielder, and never had any noticeable problem pitching, throwing, or batting. Perhaps that’s because a baseball is smaller and easier to grip than either a football or basketball. I played baseball and softball for over 50 years, maintained a good batting average, usually batted leadoff (which means I was recognized as a batter who frequently got a hit, but not often a home run), and I played a good left or center field, and pitched slow-pitch softball. I had a good reputation for catching outfield flies and being able to throw out a runner at the plate. I was able to do all this well into my fifties. My wife and I had five kids (yes, be of good courage - Hirayama’s disease has NO effect on your sex life ). I am mentioning all this to encourage everyone that Hirayama’s disease does not have to make you treat yourself as an invalid. You CAN lead an almost normal life. I have been able to teach my sons and daughter to play ball, handle a jib sheet and even sail a sloop, and was able to coach little league baseball and soccer.

By the time I was in my middle teens, I noticed that the fingers of my right hand simply didn’t have the dexterity that my left fingers did. That became a problem since I am right-handed, and slowly I developed the ability to use my left hand for fine motor activity – handling change, keys, etc. But I continued writing with my right hand all my life, and still do, although since about age 60, it has required using my left hand to support my right. I look weird having to use two hands and write very slowly, but that hasn’t stopped me. Typing has become a REAL problem in the last few years, since now I can only use one or two fingers on my right hand, while the others just sort of get in the way. It makes typing slow and laborious, but not impossible. Recently, a very good occupational therapist made a splint for my right hand that helps with typing, but it makes me look a little like Freddie Kruger, so I only put it on when the family’s out.

One of the beneficial side effects of living with a somewhat dysfunctional right hand is that I have become almost ambidextrous. Makes one a pretty darn good handball player, and I have won my fair share of handball tournaments. I played handball in my thirties and forties. My wrists and arms were strong – only my right fingers were weak. To make a strong hand in the game, I would tape all my right fingers together into a web.

For fourteen years in my thirties and forties I was a university professor (computer science, Ohio State, in case you’re wondering). The only effect Hirayama’s disease had on me that I can recall is that I was probably the only professor who wrote slowly enough on the board for my students to keep up. During that time I enjoyed playing on a softball intramural league every Summer, and in several handball and racquetball tournaments. When I turned forty I took up classical guitar and played well enough for my own satisfaction. Around age fifty I could no longer strum with my right fingers, and the guitar still sits unused in my basement. I haven’t given up the hope of playing again. During my forties and fifties I also played the recorder, a rather simple woodwind from the Middle Ages, and finally stopped when my right fingers could no longer hit the notes. In my early thirties I took up sailing, and continued until around my middle fifties, when I could no longer handle the sheets (ropes to you landlubbers). I’ve had my entire family out sailing many times with no worries about safety, but would not do so today.

Beginning in my thirties I sought medical help, but it was not until my late fifties that the Mayo Clinic finally diagnosed my condition as Hirayama’s disease (their best guess). That was about 1997, and at the time they could give me no hope of treatment or cure. Today, my right hand has deteriorated significantly and my left hand is weak but useable. Both hands show significant muscle atrophy. Both arms are thin but not skinny. My right forearm shows some muscle atrophy. I have almost normal strength gripping with the fingers of either hand. Most of the weakness is in not being able to extend my right fingers, and to a lesser extent, my left.

So, what may have caused this illness? Is it genetic, infectious, or the result of some trauma? Is it really a “disease”, or just a condition that has resulted from some unusual event? I don’t think the experts know yet, but I do know that when I was about twelve I was in a serious car accident. At the time the only consequence that was discovered was a hairline fracture in my left ankle. Back then (late 1940’s), we didn’t know about whiplash or how to detect spinal injuries. Did a car hitting me from behind at 45 mph cause this? Probably. Can I be sure that these symptoms only appeared after the accident? Frankly, I don’t remember that accurately. I was only a kid. Who knows?

Don’t give up. With some adjustments you can live a long and happy life. May you live and prosper.

[josephblayil]

Thanks for that. I'm 25 now and I feel great after reading through your post. Let's al be positive and optimistic and we can live a normal life. Thanks again for that great post.

[talloyd519]

Hello I am a 22 y/o male and I have been dx with Hirayama's Disease a while ago. I have all of the typical symptoms, but I also have triceps and chest muscles cramping when flexed or fully used like lifting something heavy. Does anyone else have this or heard of anyone having it with Hirayama's? Thanks.

[josephblayil]

Even i have very weak tricepts in my left hand. But the palm area is good thr. whears in right hand the palm area is affected


1 more point to discuss.. last day i was reading thru an article where someone successfully transferred muscle to the affected areas,

[talloyd519]

I don't really have weakness in the triceps, but when I use them, or flex them, they cramp up and stay cramped unless I take my other hand and massage it.

Also, does your arm/shoulder area get tired after repetitive movements such as fork to mouth or feeding a baby?

I have heard of the muscle transplant as well, I have not heard of how successful it is though.