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

[obama549]

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.

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.

[gripit]

Hi Susan!
Im glad to tell you that you have reached the right place.
Im diagnosed with that desease since age 17.
i have never wore a neck brace, nobody can assure me that it will stop the progress of the desease.

please read my post, its right above yours. i was a sporty guy myself but you have to understand that you must focus on your boys mind and spirit. you get to live with it, you study yoursef everyday and the body and mind are adapting automaticlly to the new state.
im 26 and over it, you can say im beyond my peak. from now on its atable and static.
i can help, if you nead help getting through those years im willing to help out.

i sent you private massage with my skype info, contact me if you like.
gripit

[SusanH]

Wondering if there are any parents out there looking for other parents of children diagnosed with this disease? My son was diagnosed several months ago after two years of seeing doctor after doctor, tests, and even surgery thinking that nerve compresion was the cause of his left hand wasting away. His right hand has now started showing signs of atrophy. He is a very active athletic 18-year-old who was planning on playing hockey in college but has now had to give up all activities and even changed colleges due to not being able to play hockey. I want to be a positive support system for him and need help from others going through a similar situation. The doctors have told him to wear a soft collar neck brace 24x7 and do not activities that cause flexing of the neck. I was so happy to find this forum. Please let me know if there are other parents out there looking for support/info.