b5sense
03-24-2004, 02:28 PM
i was diagnosed with miyoshi myopathy earlier this year and now have no idea what to do. i feel very alone and i don't like any of the doctor's that i've seen. i would just love to hear that there is someone else out there that has this and maybe we can share some experiences. my calves are very small and i can't stand on my toes or walk on my heels. i get tired very easily, but i always just thought that's what everybody felt like after a day of work/school/sports/whatever. i just want to know what to expect and what i can do now. i feel like i have to make up my own rules about all this, but i have no idea what these rules should be. i would love to hear from anybody who has this dystrophy or know someone that does. i can't stop staring at peoples calf muscles, and they all seem to be huge. very discouraging.
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Amglo
08-03-2004, 02:37 AM
I have had Miyoshi for about 7-8 years now, I have the same symptoms as you. Give some additional info, where do you live (there is a good Dr. in CA) & how old are you. I am 51 and I seem to be stableized, of course I cannot walk long distances or run but I manage just fine. Drop me a line to my private [ removed - use this board anonymously only ]. I will be happy to answer any questions that I can [ use this board anonymously only - do not solicit private contact ]
Regards,
[ removed - use this board anonymously only - do not post your real name ]
Regards,
[ removed - use this board anonymously only - do not post your real name ]
b5sense
08-19-2004, 11:34 AM
wow. i haven't checked this site for a long time because it didsn't seem like anybody was writing back. it was good to hear from you. well...i'm 25 years old and they say i've had this since i was fourteen. my left leg is smaller than my right, but they're both pretty small. my doctor has me using a cane if i'm going to be walking long distances, which is pretty hard to get used to. since i don't know what to expect in the years to come, it's kind of hard to plan for the future, but i'm trying to wrap my mind around all of this. i'm glad to hear that you're doing well with your diagnosis. it gives me some hope for myself. thanks for writing back. [ removed ] thanks again,
Bluedestin
03-20-2005, 04:04 AM
Hello,
I first discovered that my legs were getting weak at around age 17 or 18. I went through many tests and was told that I have Miyoshi Myopathy. I'm glad to meet someone that is going through the same problem that I'm having. It's been really tough dealing with it because I remember what it used to be like to run and jump and climb stairs easy. Just watching my friends around me do things with their legs make me feel depressed at times. I'm dealing with it a lot better than I was when I found out about it though and I think i'm slowly learning to live with it. I was given toe-up braces (I think that is what they called them). They work great! I'm able to walk fairly well with them on. If you don't have them, I think you should look into it. well, I guess thats all for now.
I first discovered that my legs were getting weak at around age 17 or 18. I went through many tests and was told that I have Miyoshi Myopathy. I'm glad to meet someone that is going through the same problem that I'm having. It's been really tough dealing with it because I remember what it used to be like to run and jump and climb stairs easy. Just watching my friends around me do things with their legs make me feel depressed at times. I'm dealing with it a lot better than I was when I found out about it though and I think i'm slowly learning to live with it. I was given toe-up braces (I think that is what they called them). They work great! I'm able to walk fairly well with them on. If you don't have them, I think you should look into it. well, I guess thats all for now.
dkbladez
03-26-2005, 12:25 PM
Hi all,
I was just passing through :) I really don't know where I fit in these post so I will just say hi. I had been posting on the LGMD threads because that sound like what I have. I have been having a hard time finding a doctor. My reg.doctor thought I had rheumatoid arthritis. My neurologist says that I have a myopathy after doing a emg test(?) the one of with the electrical shocks. I finally have an appointment at the muccle clinic in April so hopefully someone will tell me what I have. What are your symptoms? I don'tt know if my calves or too big or small but I tire easily, having difficulty going up steps and on any kind of curb and getting up from any low chair or position. I'm 32 now, I think I first started having symptoms 7 years ago.
Good luck to all.
Shellette
I was just passing through :) I really don't know where I fit in these post so I will just say hi. I had been posting on the LGMD threads because that sound like what I have. I have been having a hard time finding a doctor. My reg.doctor thought I had rheumatoid arthritis. My neurologist says that I have a myopathy after doing a emg test(?) the one of with the electrical shocks. I finally have an appointment at the muccle clinic in April so hopefully someone will tell me what I have. What are your symptoms? I don'tt know if my calves or too big or small but I tire easily, having difficulty going up steps and on any kind of curb and getting up from any low chair or position. I'm 32 now, I think I first started having symptoms 7 years ago.
Good luck to all.
Shellette
Bluedestin
04-03-2005, 07:55 PM
Hello,
Before you read on, I'm not a doctor so you should go seek professional info.
There are many tests that can be done to see if you have Miyoshi myopathy or type 2 limb girdle (I Think thats correct). My first doctor barely did any testing on me and said I had hereditary neuropathy. Symptoms of hereditary neuropathy are numbness and sharp pain which I did not have and this docotor said he was absolutely sure that I had this. I saw a new doctor and he did many tests on me. He is a neural muscular specialist. He did a blood test on myself and my mother to look for increased levels of Creatine Kinase. I also heard that now they can just test blood and they can see if you have miyoshi myopathy without doing any further testing. I had a muscle biopsy and an emg test. They also did a test where they put needles in my muscles and I had to flex while the needles were in my muscles.
Symptoms of Miyoshi Myopathy are weakness of the calf muscles and sometimes some weakness of your quad muscles. You'll notice that your calf muscles are smaller and weaker. You will notice that over time you can't run or jog and stairs will be a pain for you to walk up. You won't be able to stand on your tip-toes either. I read and was told that in time arms might be affected too. Miyoshi myopathy mainly affects the limbs. First the legs and then in worse cases the arms. This disease is not life threatening and is slowly progressive. It usually starts around young adulthood. For me it started when I was a Junior in Highschool. There is no cure yet but there are braces out there to help with walking. They are called toe-up braces. I'm using them and they work great!
If anyone has any questions, just ask. I did a lot of reasearch and have been diagnosed with Miyoshi myopathy. I'm very sure that I have Miyoshi Myopathy.
Before you read on, I'm not a doctor so you should go seek professional info.
There are many tests that can be done to see if you have Miyoshi myopathy or type 2 limb girdle (I Think thats correct). My first doctor barely did any testing on me and said I had hereditary neuropathy. Symptoms of hereditary neuropathy are numbness and sharp pain which I did not have and this docotor said he was absolutely sure that I had this. I saw a new doctor and he did many tests on me. He is a neural muscular specialist. He did a blood test on myself and my mother to look for increased levels of Creatine Kinase. I also heard that now they can just test blood and they can see if you have miyoshi myopathy without doing any further testing. I had a muscle biopsy and an emg test. They also did a test where they put needles in my muscles and I had to flex while the needles were in my muscles.
Symptoms of Miyoshi Myopathy are weakness of the calf muscles and sometimes some weakness of your quad muscles. You'll notice that your calf muscles are smaller and weaker. You will notice that over time you can't run or jog and stairs will be a pain for you to walk up. You won't be able to stand on your tip-toes either. I read and was told that in time arms might be affected too. Miyoshi myopathy mainly affects the limbs. First the legs and then in worse cases the arms. This disease is not life threatening and is slowly progressive. It usually starts around young adulthood. For me it started when I was a Junior in Highschool. There is no cure yet but there are braces out there to help with walking. They are called toe-up braces. I'm using them and they work great!
If anyone has any questions, just ask. I did a lot of reasearch and have been diagnosed with Miyoshi myopathy. I'm very sure that I have Miyoshi Myopathy.
kahya
04-10-2005, 05:21 PM
my mother has mioshy for 15 years now..... I would like to talk with some people who has mioshy miopathy too
kahya
04-11-2005, 02:33 PM
hi bluedestin,
I wouldlike totalk with you about it. could you send me an e-mail?
[ Please read the posting rules which explain that offering or asking off board contact is not permitted. The boards are to be used for on board sharing, only. The email and private message features are turned off so that use of the message boards remain anonymous. The only contact you may make with members is to post on the board. ]
I wouldlike totalk with you about it. could you send me an e-mail?
[ Please read the posting rules which explain that offering or asking off board contact is not permitted. The boards are to be used for on board sharing, only. The email and private message features are turned off so that use of the message boards remain anonymous. The only contact you may make with members is to post on the board. ]
phi773
04-11-2005, 06:36 PM
bluedestin--your story sounds almost exactly like mine. I think my first sign was that my knee began buckling when I was running. I was 16-17 at the time. I went to Mayo clinic at 19 and had a muscle biopsy. Now I am 26 and have seen the muscles in both of my legs slowly degenerate almost completely away. Also, my biceps are about half of what they used to be. It would be nice to know something to help treat this condition. I like hearing that there are others other there who can relate.
moderator2
04-11-2005, 07:02 PM
[ Please read the posting rules which explain that offering or asking off board contact is not permitted. The boards are to be used for on board sharing, only. The email and private message features are turned off so that use of the message boards remain anonymous. The only contact you may make with members is to post on the board. ]
Bluedestin
05-07-2005, 08:18 PM
What ever you need to know just ask me and I might have some info.
This is what my doctor told me. He said that low intensity work outs might be beneficial. Use small weights with more reps (areobic type work outs). Don't lift heavy weights and if you notice that your muscles are gettting tired or hurt then your doing too much in your work outs. I was prescribed creatine which is suppost to give me more energy but I didn't notice a difference. Maybe if I used it continueously like I"m suppost to it might make a difference. What has made a major change in my walking is toe-up braces. The braces are great! They help me walk almost normal and my legs don't get as tired.
I noticed my problem around age 17 or 18 and I'm now 21. My leg muscles are almost completely gone now. I also noticed that my tendons are tight in my forearms and in my legs.
This is what my doctor told me. He said that low intensity work outs might be beneficial. Use small weights with more reps (areobic type work outs). Don't lift heavy weights and if you notice that your muscles are gettting tired or hurt then your doing too much in your work outs. I was prescribed creatine which is suppost to give me more energy but I didn't notice a difference. Maybe if I used it continueously like I"m suppost to it might make a difference. What has made a major change in my walking is toe-up braces. The braces are great! They help me walk almost normal and my legs don't get as tired.
I noticed my problem around age 17 or 18 and I'm now 21. My leg muscles are almost completely gone now. I also noticed that my tendons are tight in my forearms and in my legs.
tensai
08-12-2005, 08:39 AM
Hi Bluedestin
( removed - please do not ask members to violate the posting rules )
Your story was extremely encouraging. I was diagnosed with Muscular dystrophy in end of 2001 and have noticed gradual deteoration in my leg muscles to the extent that I now use a crutch when I'm walking long distances/uphills.
I have also seen this product ( removed - please do not post commercial websites - use product names only ) While the cost $6000+ puts in out of reach for me and many.. if the cost becomes lower with time.....that could very well become a worthwhile investment if planning to use it over the lifetime (if the product lasts that long in the first place~).
Otherwise it was good to see people continuing normal lives as usual. Despite certain inconveniences, I think miyoshi myopathy can me made a minor factor affecting us. Also the doctors/researchers I spoke to were very much confident in being able to advance towards a possible cure in the next 5 to 10 years.
( removed - please do not ask members to violate the posting rules )
Your story was extremely encouraging. I was diagnosed with Muscular dystrophy in end of 2001 and have noticed gradual deteoration in my leg muscles to the extent that I now use a crutch when I'm walking long distances/uphills.
I have also seen this product ( removed - please do not post commercial websites - use product names only ) While the cost $6000+ puts in out of reach for me and many.. if the cost becomes lower with time.....that could very well become a worthwhile investment if planning to use it over the lifetime (if the product lasts that long in the first place~).
Otherwise it was good to see people continuing normal lives as usual. Despite certain inconveniences, I think miyoshi myopathy can me made a minor factor affecting us. Also the doctors/researchers I spoke to were very much confident in being able to advance towards a possible cure in the next 5 to 10 years.
michigani
08-12-2005, 04:44 PM
Miyoshi Myopathy sufferers; please share with me -
Did either of your parents have muscular dystrophy.???
I have Dysferlinopathy with Miyoshi-like symptoms, but dysferlin dystrophies are recessive inherited. My father had MD, my mother was "normal" so this is making my diagnosis difficult. I'm just trying to "poll" a few dysferlin patients to ask how they inherited thier condition. :confused:
Best of luck to everyone. Please reply on this thread if you can. Thanks.
Mark
Did either of your parents have muscular dystrophy.???
I have Dysferlinopathy with Miyoshi-like symptoms, but dysferlin dystrophies are recessive inherited. My father had MD, my mother was "normal" so this is making my diagnosis difficult. I'm just trying to "poll" a few dysferlin patients to ask how they inherited thier condition. :confused:
Best of luck to everyone. Please reply on this thread if you can. Thanks.
Mark
Bluedestin
09-05-2005, 04:28 AM
Hello Mark B 61,
Both my parents were fine. Neither of them showed symptoms of Miyoshi Myopathy. No one in my family has shown symptoms of Miyoshi. Both parents must be carrier of Miyoshi in order for any of their children to have it. Here, this will give you an idea of how miyoshi affects people.
Both parents are carriers and may or may not show symptoms.
Male Parent ___________ Female Parent
Kid Not Affected__________Kid Carrier (No symptoms)
Kid Carrier (Symptoms)_______Kid Carrier (No Symptoms)
A child has a 25% chance to show symptoms or at least that is what I understood from my research. 50% chance to be carriers with no symptoms. 25% chance to be completely unaffected. It is very rare to have Miyoshi Myopathy. Other family members may not show any signs of having Miyoshi when it comes to symptoms. I believe they can determine if your parents have it by doing a blood test. I don't remember if you were tested, so do a blood test if you haven't. They can tell if you have Miyoshi by a blood test. You will show high levels of Creatine Kinase if you have it. In my case to be definitely sure, they did a muscle biopsy as well. If you have any other questions, ask me and I will check from time to time with a reply.
Both my parents were fine. Neither of them showed symptoms of Miyoshi Myopathy. No one in my family has shown symptoms of Miyoshi. Both parents must be carrier of Miyoshi in order for any of their children to have it. Here, this will give you an idea of how miyoshi affects people.
Both parents are carriers and may or may not show symptoms.
Male Parent ___________ Female Parent
Kid Not Affected__________Kid Carrier (No symptoms)
Kid Carrier (Symptoms)_______Kid Carrier (No Symptoms)
A child has a 25% chance to show symptoms or at least that is what I understood from my research. 50% chance to be carriers with no symptoms. 25% chance to be completely unaffected. It is very rare to have Miyoshi Myopathy. Other family members may not show any signs of having Miyoshi when it comes to symptoms. I believe they can determine if your parents have it by doing a blood test. I don't remember if you were tested, so do a blood test if you haven't. They can tell if you have Miyoshi by a blood test. You will show high levels of Creatine Kinase if you have it. In my case to be definitely sure, they did a muscle biopsy as well. If you have any other questions, ask me and I will check from time to time with a reply.
michigani
09-06-2005, 02:13 PM
Bluedestin,
Thanks for the reply. I've been through it all at MDA clinic: Biopsies, DNA testing, Blood Tests, you name it. My biopsy showed almost no dysferlin yet a DNA test showed my "dysferlin gene" to be normal. This is VERY strange and they know it. Of the Muscular Dystrophies, those caused by dysferlinopathy are rare. And of the dysferlinopathies, 98% are caused by a "bad" dysferlin gene. So I am the 2% that's missing dysferlin for some other reason. My dad died of MD many years ago, he was 67. I've read that there are rare cases of Dysferlin Dystrophies that can be inherited dominate. I'm off to Bethesda Maryland to have this investigated next month. I'll keep you posted.
Thanks again for your reply. Best of luck.
Mark
Thanks for the reply. I've been through it all at MDA clinic: Biopsies, DNA testing, Blood Tests, you name it. My biopsy showed almost no dysferlin yet a DNA test showed my "dysferlin gene" to be normal. This is VERY strange and they know it. Of the Muscular Dystrophies, those caused by dysferlinopathy are rare. And of the dysferlinopathies, 98% are caused by a "bad" dysferlin gene. So I am the 2% that's missing dysferlin for some other reason. My dad died of MD many years ago, he was 67. I've read that there are rare cases of Dysferlin Dystrophies that can be inherited dominate. I'm off to Bethesda Maryland to have this investigated next month. I'll keep you posted.
Thanks again for your reply. Best of luck.
Mark
phi773
04-25-2006, 07:54 PM
bluedestin--are the "toe up" braces AFOs or KAFOs? Also I notice the tendons are tight in my biceps and forearms. It seems to be getting harder and harder to get up from the ground. Tensai--what is the name of the product? Thanks.
angie thornton
05-07-2006, 10:45 AM
hi just read your post I have lgmd and your symptoms sound like mine kerbs stairs getting out of chairs etc do you have any weakness in your arms ? i'm 38 and was diagnosed last June
Madalot
05-07-2006, 07:25 PM
I totally understand how you feel. I have not been diagnosed with miyoshi myopathy, but I have MD of unknown origin. It has been speculated that I have Limb-Girdle MD, Myotubular Myopathy and most recently, Oculopharyngeal MD. I was always weak, but it wasn't until I was in my 30's that a doctor said something was really wrong and that he felt I had MD because I was much weaker than I should have been. He was definitely right and the weakness has progressed to the point, like you say, walking any distance is difficult and stairs are almost impossible. I, like you, get so down about this sometimes. I am lucky, however, that my husband is very supportive and does what he can to accommodate my problem.
Try to keep your chin up and as much as possible, accept the weakness and do what you can to work around it. I know it's not easy.
Try to keep your chin up and as much as possible, accept the weakness and do what you can to work around it. I know it's not easy.
dkbladez
05-08-2006, 02:54 PM
Do any of you use the afo's or kfo's? I was fitted for leg braces but they hinder me more than anything. My quads are very weak but my calf muscles are very strong and big!
Thanks,
dkbladez
Thanks,
dkbladez
michigani
05-09-2006, 05:41 PM
Hello All !
Wow! As always, your symptoms sound a lot like mine. I definetly have known for 4 years that I have very low dysferlin levels....but not a complete absence of the protien. And my dysferlin gene is okay, so it's not Miyoshi or LGMD2B. I'm one of the rare dysferlin cases that's NOT one of those 2 types.
Second, my AFO's make walking HARDER! I don't wear them...it feels like they are catipulting my knee out from under me. When I fall it's usually because my knee buckles. I was fitted with knee braces with a spring-loaded hinge on each side but those didn't help either. We all decided I'd go without AFOs or braces right know since I can walk safer without them.
By far, my quads and shins are weekest. I cannot get up a 5" curb. Stairs and chairs take all my might. I'm getting a Pride recliner soon and looking forward to it. I'm just aggrivated by all the $$$ :mad: Also my stomach "sit-up" muscles are gone. My arms are better. I certainly can't do pushups or chin-ups, but my arms feel okay...like 60% normal strength.
Hang in there everyone. Please share any info or developments. I still hope to get my final batch of results back from the NIH study and I'll keep you posted.
Mark :wave:
Wow! As always, your symptoms sound a lot like mine. I definetly have known for 4 years that I have very low dysferlin levels....but not a complete absence of the protien. And my dysferlin gene is okay, so it's not Miyoshi or LGMD2B. I'm one of the rare dysferlin cases that's NOT one of those 2 types.
Second, my AFO's make walking HARDER! I don't wear them...it feels like they are catipulting my knee out from under me. When I fall it's usually because my knee buckles. I was fitted with knee braces with a spring-loaded hinge on each side but those didn't help either. We all decided I'd go without AFOs or braces right know since I can walk safer without them.
By far, my quads and shins are weekest. I cannot get up a 5" curb. Stairs and chairs take all my might. I'm getting a Pride recliner soon and looking forward to it. I'm just aggrivated by all the $$$ :mad: Also my stomach "sit-up" muscles are gone. My arms are better. I certainly can't do pushups or chin-ups, but my arms feel okay...like 60% normal strength.
Hang in there everyone. Please share any info or developments. I still hope to get my final batch of results back from the NIH study and I'll keep you posted.
Mark :wave:
palomablancabg
06-28-2006, 02:50 AM
Hello everyone,
My name is Paloma and I just recently found out that my cousin whom is like a brother to me and is my same age 20 has miyoshi myopathy. He has not been oficially diagnosed because he has not gone back to get a biopsy done. I don't know what to do to help him. I think he doesnt want to go back to the doctor because he's scared they will tell him that he definetly has this disease. My other cousin whom just recently graduated from berkeley told me that when she asked him to come to her graduation he said no because he was scared that he wouldn't be able to make it up the bleachers. He is all the way in northern california in San Francisco, and I am in southern California Riverside. It is hard for me to know he has this and not be able to help him because he is so far away. I was also informed by my cousin the same one whom graduated from berkeley that his arms are also beginning to get smaller, and his calfs are already very small considering his height. I am so scared of what is going to happen, will he have to go on a wheelchair, will he be completely immobile? Any help I can get would be tremendous. And what can I do for him? Is there any type of medication or anything out there for people who suffer from this?
thanks
My name is Paloma and I just recently found out that my cousin whom is like a brother to me and is my same age 20 has miyoshi myopathy. He has not been oficially diagnosed because he has not gone back to get a biopsy done. I don't know what to do to help him. I think he doesnt want to go back to the doctor because he's scared they will tell him that he definetly has this disease. My other cousin whom just recently graduated from berkeley told me that when she asked him to come to her graduation he said no because he was scared that he wouldn't be able to make it up the bleachers. He is all the way in northern california in San Francisco, and I am in southern California Riverside. It is hard for me to know he has this and not be able to help him because he is so far away. I was also informed by my cousin the same one whom graduated from berkeley that his arms are also beginning to get smaller, and his calfs are already very small considering his height. I am so scared of what is going to happen, will he have to go on a wheelchair, will he be completely immobile? Any help I can get would be tremendous. And what can I do for him? Is there any type of medication or anything out there for people who suffer from this?
thanks
Biscuitsmom31
06-29-2006, 06:02 PM
My husband was diagnosed with Miyoshi Myopathy yesterday. He was originally diagnosed with LGMD 16 years ago at age 18. He started using an electric wheelchair about a year ago after a series of disatrous falls. He really resisted the chair but now that he has it our whole family's life is MUCH better. We can go to the mall and amusement parks, which we couldn't do before. Best of all, now he can enjoy being with his family and not be constantly stressed about falling. His arms are also affected - mainly in his biceps and triceps. He first had symptoms at 15 and is now 34. We were pleased to find out that he has Miyoshi Myopathy because it's a recessive trait. We have children, so it is good to know it is very unlikely that they will be affected.
michigani
06-30-2006, 04:46 PM
Hello Paloma,
I can't stress enough that the best thing your cousin can do is to visit his local MDA clinic and get a diagnosis. I understand about being scared to find out. But it gets to the point where you are falling and can't get up or can't climb stairs. Then you have to tell people "I don't know what's wrong". I''ve been there. I't SO much easier once you know for sure and all your friends and family know too. There's no more hiding or missing events because you're scared of the symptoms showing. Friends and family that love him will be glad to help out and will understand. Also have him visit this forum and talk to others with the same condition.
Best of luck to him and your family,
Mark
I can't stress enough that the best thing your cousin can do is to visit his local MDA clinic and get a diagnosis. I understand about being scared to find out. But it gets to the point where you are falling and can't get up or can't climb stairs. Then you have to tell people "I don't know what's wrong". I''ve been there. I't SO much easier once you know for sure and all your friends and family know too. There's no more hiding or missing events because you're scared of the symptoms showing. Friends and family that love him will be glad to help out and will understand. Also have him visit this forum and talk to others with the same condition.
Best of luck to him and your family,
Mark
michigani
06-30-2006, 05:02 PM
Hi Biscuitsmom,
I'm sorry about your hubby. I've been through the mis-diagnosis ringer myself (read my other posts). We thought I had LGMD2B, the other Dysferlin related dystrophy. Biopsy and staining in 2002 indicated a dysferlin deficiency, but a recent Western Blot Test showed Dysferlin to be about normal. My symptoms are almost completely opposite of Miyoshi Myopathy but with the same devistating results.....
The front of my legs, that is, shins, quadriceps and hip flexors (sit-up muscles) are gone. My triceps are very weak. But my calves and biceps are much less affected and still pretty developed and strong. But I'm very scared walking because I only have the back-of-leg muscles to use.
I understand about resisting "the chair". I don't have one yet (I use a cane) but I did agree that if we go to the zoo or amusement park this summer that I will rent a scooter or chair so as not to fall or slow my family down. Besides I know I would get incredibly fatigued.
I have 2 beautiful healthy teenage daughters so I understand the fear of dominant inheritance as well. But I'm optimistic and happy so far. It could be worse and I feel very blessed. You have my best wishes.
Mark
I'm sorry about your hubby. I've been through the mis-diagnosis ringer myself (read my other posts). We thought I had LGMD2B, the other Dysferlin related dystrophy. Biopsy and staining in 2002 indicated a dysferlin deficiency, but a recent Western Blot Test showed Dysferlin to be about normal. My symptoms are almost completely opposite of Miyoshi Myopathy but with the same devistating results.....
The front of my legs, that is, shins, quadriceps and hip flexors (sit-up muscles) are gone. My triceps are very weak. But my calves and biceps are much less affected and still pretty developed and strong. But I'm very scared walking because I only have the back-of-leg muscles to use.
I understand about resisting "the chair". I don't have one yet (I use a cane) but I did agree that if we go to the zoo or amusement park this summer that I will rent a scooter or chair so as not to fall or slow my family down. Besides I know I would get incredibly fatigued.
I have 2 beautiful healthy teenage daughters so I understand the fear of dominant inheritance as well. But I'm optimistic and happy so far. It could be worse and I feel very blessed. You have my best wishes.
Mark
sairam
07-07-2006, 04:16 PM
Hi,
I live in CA too. I was diagnosed with MM 10years back. i'm now 36 years.
Right now i have very week legs, i use walker or support of my husband to walk. I feel weakness in my arms from pas 1 year. could you please send me your Doctor info.
I live in CA too. I was diagnosed with MM 10years back. i'm now 36 years.
Right now i have very week legs, i use walker or support of my husband to walk. I feel weakness in my arms from pas 1 year. could you please send me your Doctor info.
Amglo
09-27-2006, 08:06 PM
Sairam and Paloma,
I have had Miyoshi for years now..there is a very good doctor at the California Pacific Medical Center in San Francisco, his name is Jon Katz. Contact the clinic for an appointment. Paloma, tell your cousin to face reality, it is better to know what your dealing with rather than dreading the unknown. I spent 30 days traveling Europe in March and with proper planning I was able to have a great time. Good Luck.
I have had Miyoshi for years now..there is a very good doctor at the California Pacific Medical Center in San Francisco, his name is Jon Katz. Contact the clinic for an appointment. Paloma, tell your cousin to face reality, it is better to know what your dealing with rather than dreading the unknown. I spent 30 days traveling Europe in March and with proper planning I was able to have a great time. Good Luck.