Hi Louise,

I'm in Cambridge, UK, though I'm American. My partner and I are living here for a while. I'm trying to get an appointment with Dr. Kate Bushby's office in Newcastle. She is one of the world experts, both research-wise and clinically, on some types of LGMD. Since you're in Newcastle, I would suppose you've heard of her. But in case not, FYI! I don't know that she'll have any "magic bullet" at all, but it will good to see someone so familiar with my condition. (I'm thought to have dysferlinopathy, and am currently waiting on results from a genetic analysis.)

All the best!

Marian

-----Original Message-----
From: dysferlin@yahoogroups.com [mailto:dysferlin@yahoogroups.com]
Sent: Wed 4/22/2009 12:44 PM
To: dysferlin@yahoogroups.com
Subject: [dysferlin] Digest Number 225

Dysferlin Deficiency <http://groups.yahoo.com/group/dysferlin;_ylc=X3oDMTJkNTh2anNtBF9TAzk3MzU5NzE1BGdycElkAzMzNzY4ODEEZ3Jwc3BJZAMxNzA1MDYxNzc2BHNlYwNoZHIEc2xrA2hwaARzdGltZQMxMjQwNDAwNjU0>

Messages In This Digest (5 Messages)

1a.
Re: Non-dysferlin LGMD From: Louise Needham
1b.
Re: Non-dysferlin LGMD From: patty martinez
1c.
Re: Non-dysferlin LGMD From: Suzanne Croft

2a.
What to Say, Shopping etc. From: Christina Ray
2b.
Re: What to Say, Shopping etc. From: Miriam Mejia

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Messages

1a.

Re: Non-dysferlin LGMD <http://groups.yahoo.com/group/dysferlin/message/475;_ylc=X3oDMTJwYjRocDVuBF9TAzk3MzU5NzE1BGdycElkAzMzNzY4ODEEZ3Jwc3BJZAMxNzA1MDYxNzc2BG1zZ0lkAzQ3NQRzZWMDZG1zZwRzbGsDdm1zZwRzdGltZQMxMjQwNDAwNjU0>

Posted by: "Louise Needham" louiseneedham@hotmail.com <mailto:louiseneedham@hotmail.com?Subject= Re%3A%20Non-dysferlin%20LGMD> louiseneedham21 <http://profiles.yahoo.com/louiseneedham21>

Tue Apr 21, 2009 7:26 am (PDT)

Hi Patty,

Before posting on this group I hadn't heard of any other family who have the dysferlin-positive type LGMD. I was trying to find an explanation as to why my mum is so badly affected, but my aunt is only mildly affected. I now know that I was just jumping to the wrong conclusions, and that everyone is affected differently. Also, this will sound horrible, but when we were little me and my sister were complaining about mum not being able to walk fast enough, and my dad told us it was because of us she was like that. I just wish there was more information about this disease! But I think this message board is really good and helps people who have the disease by connecting them with others in the same position.


To: dysferlin@yahoogroups.com <mailto:dysferlin%40yahoogroups.com>
From: pattymartinez1980@yahoo.com <mailto:pattymartinez1980%40yahoo.com>
Date: Mon, 20 Apr 2009 20:46:00 -0700
Subject: Re: [dysferlin] Re: Non-dysferlin LGMD

Hi Louise

I was reading your post about how children have affected people with lgmd. I have 2 boys one age 11 and the other 4 I really didn't notice much after my first I was still able to squat, tip toe, and run then it wasn't till about 5 years later that i noticed i was really clumsy, and that i could no longer tip toe. After my second son thats when the symptoms were really noticable and really affected my everyday life. The Doctor once told me that sometimes this disorder can be triggered by trauma or stress your body goes thru, but it is not a concrete fact. I hope this helps good luck and take care.
--- On Sun, 4/19/09, DeejLouise <deejlouise@yahoo.com <mailto:deejlouise%40yahoo.com> > wrote:

From: DeejLouise <deejlouise@yahoo.com <mailto:deejlouise%40yahoo.com> >
Subject: [dysferlin] Re: Non-dysferlin LGMD
To: dysferlin@yahoogroups.com <mailto:dysferlin%40yahoogroups.com>
Date: Sunday, April 19, 2009, 9:09 PM

Louise,

I can understand your paranoia about being suspect of your pains. Take comfort in how rare this is and that it is a recessive trait not likely to have been passed to you or your sister. I am constantly wondering if my aches and pains are related to this or if they are just natural aging pains. I did a lot of housework yesterday and my feet and back are killing me.

The weakness in my arms seem to be mostly the upper arms. They get tired quickly with any overhead tasks. I gave my husband a hair cut and with in ten minutes my arms started aching. I really wouldn't have thought it was related except that I had an EMG test done and they tested my calves, thighs, hands and upper arms and the test showed abnormalities in all areas. I do a lot of typing at work and sometimes my shoulders will start hurting.

Take care,

Donna

--- In dysferlin@yahoogrou ps.com, Louise Needham <louiseneedham@ ...> wrote:
>
>
> Hi Donna,
>
>
>
> I guess I assumed that having children made things worse because my mum started showing symptoms at her first pregnancy, and they got worse after her second (me). Also, my aunt had no children and is only mildly affected at age 56. However, this is probably a coincidence, and just shows that everyone is affected differently. My mum's walking has been affected for a long time, but I don't think her knees started bending like that until about 10 years ago or so (when she was in her early 40s). But even that was at least 10 years after symptoms of LGMD started. It probably depends how big the mutation in your gene is, and how much wear and tear you put yourself through.
>
>
>
> Since mum was diagnosed, we've been told that it's unlikely to get passed on. But because the mutation is not known they can't test my dad for carrier-status. I feel stupid for thinking it, but me and my sister get paranoid every time our legs hurt!
>
>
>
> Is it your upper or lower arm that is weak (sorry I can't remember the proper names for the muscles!)? Also, do you get pains in your hands? My mum has quite strong arms (which helps), but has been mentioning having pains in her hand recently. This might be pressure from using her walking sticks though.
>
>
>
> Best wishes,
>
> Louise
>
>
>
> To: dysferlin@yahoogrou ps.com
> From: deejlouise@. ..
> Date: Sun, 19 Apr 2009 20:29:29 +0000
> Subject: [dysferlin] Re: Non-dysferlin LGMD
>
>
>
>
>
>
>
> Louise,
>
> I live in Iowa, USA.
>
> You are also the first family I've come across that has what I have. Doctors just know that I don't have dysferlin deficiency and that I have many of the same symptoms as those that do. Along with my tip-toe issue, I have a lot of fatty infiltration in my back muscles as well as muscle weakness in my calves, thighs and arms. I mentioned that my brother is showing symptoms, but he hasn't gone through any of the tests that I have been through. I don't know of anyone else on my mother's side of the family that had this, so it must have been a long ways down the family tree. Because this is on the recessive gene, no one really thought about it being passed down, since my mom was definitely not related to my dad.
>
> I'm very interested in how pregnacey affected your mother. I would still like to have children, but because of my age (39) and not knowing how pregnancy would affect my body, I wonder what I could possibly expect to happen. I know that LGMD affects people differently so I know that how pregnancy affected her, may not affect me in the same way, but being prepared would make it easier to accept. I shouldn't have waited so long to start a family. :) I'm not totally convinced that pregnancy has anything to do with the progression of LGMD since my grandfather suffered quite severely from this and obviously he didn't give birth! You cannot assume that because your mother had you, that she was worse off. Also, how old was you mother when her knees began bending crazy? How old is your aunt that suffers with this?
>
> Regards,
>
> Donna
>
> --- In dysferlin@yahoogrou ps.com, Louise Needham <louiseneedham@ > wrote:
> >
> >
> > Hi Donna,
> >
> >
> >
> > Thanks for replying so quickly! You're the first family I've heard of who are dysferlin-positive as well, and it sounds like you have similar symptoms. My mum was the first one in the family who had this (as far back as we know), but now that my aunt has it at least we can assume it's recessive and not a new mutation. It seems like such a rare thing, the specialist kept asking if my grandparents were related since they must have both been carriers! (They weren't though).
> >
> > Since the muscles in my mum's thighs are so wasted, she can't support herself with her knees bent the right way. So I think it just started happening when she was walking, her knees started hyperextending backwards because she couldn't support them. The specialist we saw a couple of years ago said if she carried on walking like that, eventually her knees would dislocate. He gave her braces to wear that stopped her knees bending, but after walking like that for so many years she couldn't get used to them. My aunt seems to be affected much less severely, her knees don't bend back, but her muscles are a bit weak and she can't stand on tip-toes. I think it affects you worse if you've had children, which makes me feel awful!
> >
> > My mum has used walking sticks as long as I can remember (I'm 21), and her walking has gotten gradually worse over the years. She still manages to go short distances, but I was worried she was exerting herself too much, and now she uses a wheelchair for the more strenuous things like shopping. My mum still stays active - swimming is a good thing for her to do because she can use her arms mostly.
> >
> > Just out of interest, where abouts are you? I'm in Newcastle, England.
> >
> >
> >
> > Best wishes,
> >
> > Louise
> >
> >
> >
> >
> >
> > To: dysferlin@yahoogrou ps.com
> > From: deejlouise@
> > Date: Thu, 16 Apr 2009 00:13:08 +0000
> > Subject: [dysferlin] Re: Non-dysferlin LGMD
> >
> >
> >
> >
> >
> >
> >
> > Hi Louise,
> >
> > What your mum and aunt suffer from sounds exactly what my grandfather suffered from. They didn't have a diagnosis for him back when he first started showing signs. They just diagnosed him with muscular dystrophy. He started showing symptoms when he was in his late 30's and was wheelchair bound by his 60's. When I was a little girl, he was already using a cain to walk. His knees would bend back too. I wasn't close to my grandfather as my folks were divorced and he lived in a different state. But I do remember those few things. I now am suffering from some non-dysferlin LGMD. I'm 39 years old and started noticing symptoms about 2 years ago. I've under gone several tests, but all tests show that dysferlin is present and functioning. I have 4 brothers and one of them (a year older than me) is also developing symptoms. I only seem to have issues with toe walking as my calf muscles have wasted away to practically nothing. My brother, however, mentioned burning sensations around his knees, which I'm wondering if this is perhaps the beginnings of the crazy bending of the knee. He has also mentioned issues with tip-toe. I would be interested in keeping up with your mother's progress, as she seems to be on the same path of progression I'm heading towards.
> >
> > I'll stop rambling now...
> >
> > Donna
> > --- In dysferlin@yahoogrou ps.com, "louiseneedham21" <louiseneedham@ > wrote:
> > >
> > > Hi I'm Louise, this is my first post.
> > > I don't have LGMD, but my mum has suffered with it for about 25 years now. Interestingly, she only started to show symptoms during her first pregnancy, aged 28. Now at 53, she is making the transition from walking sticks to wheelchair, but hopefully she won't be completely dependent on the chair.
> > > I'm trying to find out more information, because my mum has one of the rare types of LGMD where her dysferlin function is normal. It is not known what gene mutation causes her condition, but they assume it is recessively inherited and that me and my sister will not be affected. My aunt is just starting to show symptoms now, at 56 and going through menopause! I was just wondering if anyone knows anything about it, or even knows someone that has this.
> > > My mum has a lot of muscle wastage on her thighs, and when she walks her knees bend back at a horrible angle. However, her arms don't seem to be affected. Like most of you, she can't stand on her tip-toes and falls over a lot.
> > > Any information would mean a lot,
> > > Thanks, Louise.
> > >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> > ____________ _________ _________ _________ _________ _________ _
> > Beyond Hotmail - see what else you can do with Windows Live.
> > http://clk.atdmt. com/UKM/go/ 134665375/ direct/01/
> >
>
>
>
>
>
>
>
>
>
> ____________ _________ _________ _________ _________ _________ _
> View your Twitter and Flickr updates from one place - Learn more!
> http://clk.atdmt. com/UKM/go/ 137984870/ direct/01/
>

__________________________________________________________
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1b.

Re: Non-dysferlin LGMD <http://groups.yahoo.com/group/dysferlin/message/476;_ylc=X3oDMTJwM284ZW85BF9TAzk3MzU5NzE1BGdycElkAzMzNzY4ODEEZ3Jwc3BJZAMxNzA1MDYxNzc2BG1zZ0lkAzQ3NgRzZWMDZG1zZwRzbGsDdm1zZwRzdGltZQMxMjQwNDAwNjU0>

Posted by: "patty martinez" pattymartinez1980@yahoo.com <mailto:pattymartinez1980@yahoo.com?Subject= Re%3A%20Non-dysferlin%20LGMD> pattymartinez1980 <http://profiles.yahoo.com/pattymartinez1980>

Tue Apr 21, 2009 9:47 am (PDT)

I'm so sorry that as a child you had to carry the guilt of your mothers physical condition. My children don't know why this has happened but my older son has the idea that what caused the symptoms was the pregnancies but we have done our best to assure him that he was not the cause of my illness. We have just explained that there are certain things in life that we can't explain and may never understand but that this illness was already a part of me when i was born.Â

--- On Tue, 4/21/09, Louise Needham <louiseneedham@hotmail.com <mailto:louiseneedham%40hotmail.com> > wrote:

From: Louise Needham <louiseneedham@hotmail.com <mailto:louiseneedham%40hotmail.com> >
Subject: RE: [dysferlin] Re: Non-dysferlin LGMD
To: dysferlin@yahoogroups.com <mailto:dysferlin%40yahoogroups.com>
Date: Tuesday, April 21, 2009, 9:26 AM

Hi Patty,
Â
Before posting on this group I hadn't heard of any other family who have the dysferlin-positive type LGMD. I was trying to find an explanation as to why my mum is so badly affected, but my aunt is only mildly affected. I now know that I was just jumping to the wrong conclusions, and that everyone is affected differently. Also, this will sound horrible, but when we were little me and my sister were complaining about mum not being able to walk fast enough, and my dad told us it was because of us she was like that. I just wish there was more information about this disease! But I think this message board is really good and helps people who have the disease by connecting them with others in the same position.
Â

To: dysferlin@yahoogrou ps.com
From: pattymartinez1980@ yahoo.com
Date: Mon, 20 Apr 2009 20:46:00 -0700
Subject: Re: [dysferlin] Re: Non-dysferlin LGMD

Hi Louise
Â
I was reading your post about how children have affected people with lgmd. I have 2 boys one age 11 and the other 4 I really didn't notice much after my first I was still able to squat, tip toe, and run then it wasn't till about 5 years later that i noticed i was really clumsy, and that i could no longer tip toe. After my second son thats when the symptoms were really noticable and really affected my everyday life. The Doctor once told me that sometimes this disorder can be triggered by trauma or stress your body goes thru, but it is not a concrete fact. I hope this helps good luck and take care.Â
--- On Sun, 4/19/09, DeejLouise <deejlouise@yahoo. com> wrote:

From: DeejLouise <deejlouise@yahoo. com>
Subject: [dysferlin] Re: Non-dysferlin LGMD
To: dysferlin@yahoogrou ps.com
Date: Sunday, April 19, 2009, 9:09 PM

Louise,

I can understand your paranoia about being suspect of your pains. Take comfort in how rare this is and that it is a recessive trait not likely to have been passed to you or your sister. I am constantly wondering if my aches and pains are related to this or if they are just natural aging pains. I did a lot of housework yesterday and my feet and back are killing me.

The weakness in my arms seem to be mostly the upper arms. They get tired quickly with any overhead tasks. I gave my husband a hair cut and with in ten minutes my arms started aching. I really wouldn't have thought it was related except that I had an EMG test done and they tested my calves, thighs, hands and upper arms and the test showed abnormalities in all areas. I do a lot of typing at work and sometimes my shoulders will start hurting.

Take care,

Donna

--- In dysferlin@yahoogrou ps.com, Louise Needham <louiseneedham@ ...> wrote:
>
>
> Hi Donna,
>
>
>
> I guess I assumed that having children made things worse because my mum started showing symptoms at her first pregnancy, and they got worse after her second (me). Also, my aunt had no children and is only mildly affected at age 56. However, this is probably a coincidence, and just shows that everyone is affected differently. My mum's walking has been affected for a long time, but I don't think her knees started bending like that until about 10 years ago or so (when she was in her early 40s). But even that was at least 10 years after symptoms of LGMD started. It probably depends how big the mutation in your gene is, and how much wear and tear you put yourself through.
>
>
>
> Since mum was diagnosed, we've been told that it's unlikely to get passed on. But because the mutation is not known they can't test my dad for carrier-status. I feel stupid for thinking it, but me and my sister get paranoid every time our legs hurt!
>
>
>
> Is it your upper or lower arm that is weak (sorry I can't remember the proper names for the muscles!)? Also, do you get pains in your hands? My mum has quite strong arms (which helps), but has been mentioning having pains in her hand recently. This might be pressure from using her walking sticks though.
>
>
>
> Best wishes,
>
> Louise
>
>
>
> To: dysferlin@yahoogrou ps.com
> From: deejlouise@. ..
> Date: Sun, 19 Apr 2009 20:29:29 +0000
> Subject: [dysferlin] Re: Non-dysferlin LGMD
>
>
>
>
>
>
>
> Louise,
>
> I live in Iowa, USA.
>
> You are also the first family I've come across that has what I have. Doctors just know that I don't have dysferlin deficiency and that I have many of the same symptoms as those that do. Along with my tip-toe issue, I have a lot of fatty infiltration in my back muscles as well as muscle weakness in my calves, thighs and arms. I mentioned that my brother is showing symptoms, but he hasn't gone through any of the tests that I have been through. I don't know of anyone else on my mother's side of the family that had this, so it must have been a long ways down the family tree. Because this is on the recessive gene, no one really thought about it being passed down, since my mom was definitely not related to my dad.
>
> I'm very interested in how pregnacey affected your mother. I would still like to have children, but because of my age (39) and not knowing how pregnancy would affect my body, I wonder what I could possibly expect to happen. I know that LGMD affects people differently so I know that how pregnancy affected her, may not affect me in the same way, but being prepared would make it easier to accept. I shouldn't have waited so long to start a family. :) I'm not totally convinced that pregnancy has anything to do with the progression of LGMD since my grandfather suffered quite severely from this and obviously he didn't give birth! You cannot assume that because your mother had you, that she was worse off. Also, how old was you mother when her knees began bending crazy? How old is your aunt that suffers with this?
>
> Regards,
>
> Donna
>
> --- In dysferlin@yahoogrou ps.com, Louise Needham <louiseneedham@ > wrote:
> >
> >
> > Hi Donna,
> >
> >
> >
> > Thanks for replying so quickly! You're the first family I've heard of who are dysferlin-positive as well, and it sounds like you have similar symptoms. My mum was the first one in the family who had this (as far back as we know), but now that my aunt has it at least we can assume it's recessive and not a new mutation. It seems like such a rare thing, the specialist kept asking if my grandparents were related since they must have both been carriers! (They weren't though).
> >
> > Since the muscles in my mum's thighs are so wasted, she can't support herself with her knees bent the right way. So I think it just started happening when she was walking, her knees started hyperextending backwards because she couldn't support them. The specialist we saw a couple of years ago said if she carried on walking like that, eventually her knees would dislocate. He gave her braces to wear that stopped her knees bending, but after walking like that for so many years she couldn't get used to them. My aunt seems to be affected much less severely, her knees don't bend back, but her muscles are a bit weak and she can't stand on tip-toes. I think it affects you worse if you've had children, which makes me feel awful!
> >
> > My mum has used walking sticks as long as I can remember (I'm 21), and her walking has gotten gradually worse over the years. She still manages to go short distances, but I was worried she was exerting herself too much, and now she uses a wheelchair for the more strenuous things like shopping. My mum still stays active - swimming is a good thing for her to do because she can use her arms mostly.
> >
> > Just out of interest, where abouts are you? I'm in Newcastle, England.
> >
> >
> >
> > Best wishes,
> >
> > Louise
> >
> >
> >
> >
> >
> > To: dysferlin@yahoogrou ps.com
> > From: deejlouise@
> > Date: Thu, 16 Apr 2009 00:13:08 +0000
> > Subject: [dysferlin] Re: Non-dysferlin LGMD
> >
> >
> >
> >
> >
> >
> >
> > Hi Louise,
> >
> > What your mum and aunt suffer from sounds exactly what my grandfather suffered from. They didn't have a diagnosis for him back when he first started showing signs. They just diagnosed him with muscular dystrophy. He started showing symptoms when he was in his late 30's and was wheelchair bound by his 60's. When I was a little girl, he was already using a cain to walk. His knees would bend back too. I wasn't close to my grandfather as my folks were divorced and he lived in a different state. But I do remember those few things. I now am suffering from some non-dysferlin LGMD. I'm 39 years old and started noticing symptoms about 2 years ago. I've under gone several tests, but all tests show that dysferlin is present and functioning. I have 4 brothers and one of them (a year older than me) is also developing symptoms. I only seem to have issues with toe walking as my calf muscles have wasted away to practically nothing. My brother, however, mentioned
burning sensations around his knees, which I'm wondering if this is perhaps the beginnings of the crazy bending of the knee. He has also mentioned issues with tip-toe. I would be interested in keeping up with your mother's progress, as she seems to be on the same path of progression I'm heading towards.
> >
> > I'll stop rambling now...
> >
> > Donna
> > --- In dysferlin@yahoogrou ps.com, "louiseneedham21" <louiseneedham@ > wrote:
> > >
> > > Hi I'm Louise, this is my first post.
> > > I don't have LGMD, but my mum has suffered with it for about 25 years now. Interestingly, she only started to show symptoms during her first pregnancy, aged 28. Now at 53, she is making the transition from walking sticks to wheelchair, but hopefully she won't be completely dependent on the chair.
> > > I'm trying to find out more information, because my mum has one of the rare types of LGMD where her dysferlin function is normal. It is not known what gene mutation causes her condition, but they assume it is recessively inherited and that me and my sister will not be affected. My aunt is just starting to show symptoms now, at 56 and going through menopause! I was just wondering if anyone knows anything about it, or even knows someone that has this.
> > > My mum has a lot of muscle wastage on her thighs, and when she walks her knees bend back at a horrible angle. However, her arms don't seem to be affected. Like most of you, she can't stand on her tip-toes and falls over a lot.
> > > Any information would mean a lot,
> > > Thanks, Louise.
> > >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> > ____________ _________ _________ _________ _________ _________ _
> > Beyond Hotmail â?" see what else you can do with Windows Live.
> > http://clk.atdmt. com/UKM/go/ 134665375/ direct/01/
> >
>
>
>
>
>
>
>
>
>
> ____________ _________ _________ _________ _________ _________ _
> View your Twitter and Flickr updates from one place â?" Learn more!
> http://clk.atdmt. com/UKM/go/ 137984870/ direct/01/
>

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Re: Non-dysferlin LGMD <http://groups.yahoo.com/group/dysferlin/message/479;_ylc=X3oDMTJwb2hmNzQ0BF9TAzk3MzU5NzE1BGdycElkAzMzNzY4ODEEZ3Jwc3BJZAMxNzA1MDYxNzc2BG1zZ0lkAzQ3OQRzZWMDZG1zZwRzbGsDdm1zZwRzdGltZQMxMjQwNDAwNjU0>

Posted by: "Suzanne Croft" joesuzi.croft@tesco.net <mailto:joesuzi.croft@tesco.net?Subject= Re%3A%20Non-dysferlin%20LGMD> craftycroftyuk <http://profiles.yahoo.com/craftycroftyuk>

Wed Apr 22, 2009 2:05 am (PDT)

Hi

I have Miyoshi type LGMD and am now 40 for starters! My symptoms started in my early 20s. I married at 23 and i have two kids which I had at 30 and 33. I didn't notice any more worsening than the usual during this time. In fact, being a mum has helped me to realise that I'm not the most important peron now in my life and has given me a real focus. I think that if i hadn't have had kids then I might have been tempted to "give in" a bit and let the disease win!

I still work part-time, managing a dental practice so i have a lot of contact with the public. I use a wheelchair when I go out of the house with the exception of when I'm at work (where I use an elbow crutch to help get around). At work I am constantly hearing the phrase "what have you done" and I honestly think they are expecting the answer like "i've torn a muscle" or "i've cracked a bone". For this reason, and because I'm unlikely to see them again socially, I usually just reply "oh nothing much!". This is not because I'm embarrased or ashamed of the truth but because I find that usually the truth is too shocking to a stranger who is just being polite. If they persist in question asking, or if it is someone I've met socially, I would just say that I have Muscular Dystrophy. If they are interested to know more they will usually ask at this stage & I will answer their questions honestly. I also find that when I'm in my wheelchair, far fewer people ask! Children are the best. They just come out and ask what they're thinking and I find that a really simple answer like " my legs don't work very well" satisfies them without scaring them (their parents are usually coweriing in embassment that their child has asked!"

I hope I haven't rambled on too much but I feel sooooo strongly that positive advice and thinking is the key to winning!

Take Care

Suzanne, Surrey UK
----- Original Message -----
From: DeejLouise
To: dysferlin@yahoogroups.com <mailto:dysferlin%40yahoogroups.com>
Sent: Sunday, April 19, 2009 9:29 PM
Subject: [dysferlin] Re: Non-dysferlin LGMD

Louise,

I live in Iowa, USA.

You are also the first family I've come across that has what I have. Doctors just know that I don't have dysferlin deficiency and that I have many of the same symptoms as those that do. Along with my tip-toe issue, I have a lot of fatty infiltration in my back muscles as well as muscle weakness in my calves, thighs and arms. I mentioned that my brother is showing symptoms, but he hasn't gone through any of the tests that I have been through. I don't know of anyone else on my mother's side of the family that had this, so it must have been a long ways down the family tree. Because this is on the recessive gene, no one really thought about it being passed down, since my mom was definitely not related to my dad.

I'm very interested in how pregnacey affected your mother. I would still like to have children, but because of my age (39) and not knowing how pregnancy would affect my body, I wonder what I could possibly expect to happen. I know that LGMD affects people differently so I know that how pregnancy affected her, may not affect me in the same way, but being prepared would make it easier to accept. I shouldn't have waited so long to start a family. :) I'm not totally convinced that pregnancy has anything to do with the progression of LGMD since my grandfather suffered quite severely from this and obviously he didn't give birth! You cannot assume that because your mother had you, that she was worse off. Also, how old was you mother when her knees began bending crazy? How old is your aunt that suffers with this?

Regards,

Donna

--- In dysferlin@yahoogroups.com <mailto:dysferlin%40yahoogroups.com> , Louise Needham <louiseneedham@...> wrote:
>
>
> Hi Donna,
>
>
>
> Thanks for replying so quickly! You're the first family I've heard of who are dysferlin-positive as well, and it sounds like you have similar symptoms. My mum was the first one in the family who had this (as far back as we know), but now that my aunt has it at least we can assume it's recessive and not a new mutation. It seems like such a rare thing, the specialist kept asking if my grandparents were related since they must have both been carriers! (They weren't though).
>
> Since the muscles in my mum's thighs are so wasted, she can't support herself with her knees bent the right way. So I think it just started happening when she was walking, her knees started hyperextending backwards because she couldn't support them. The specialist we saw a couple of years ago said if she carried on walking like that, eventually her knees would dislocate. He gave her braces to wear that stopped her knees bending, but after walking like that for so many years she couldn't get used to them. My aunt seems to be affected much less severely, her knees don't bend back, but her muscles are a bit weak and she can't stand on tip-toes. I think it affects you worse if you've had children, which makes me feel awful!
>
> My mum has used walking sticks as long as I can remember (I'm 21), and her walking has gotten gradually worse over the years. She still manages to go short distances, but I was worried she was exerting herself too much, and now she uses a wheelchair for the more strenuous things like shopping. My mum still stays active - swimming is a good thing for her to do because she can use her arms mostly.
>
> Just out of interest, where abouts are you? I'm in Newcastle, England.
>
>
>
> Best wishes,
>
> Louise
>
>
>
>
>
> To: dysferlin@yahoogroups.com <mailto:dysferlin%40yahoogroups.com>
> From: deejlouise@...
> Date: Thu, 16 Apr 2009 00:13:08 +0000
> Subject: [dysferlin] Re: Non-dysferlin LGMD
>
>
>
>
>
>
>
> Hi Louise,
>
> What your mum and aunt suffer from sounds exactly what my grandfather suffered from. They didn't have a diagnosis for him back when he first started showing signs. They just diagnosed him with muscular dystrophy. He started showing symptoms when he was in his late 30's and was wheelchair bound by his 60's. When I was a little girl, he was already using a cain to walk. His knees would bend back too. I wasn't close to my grandfather as my folks were divorced and he lived in a different state. But I do remember those few things. I now am suffering from some non-dysferlin LGMD. I'm 39 years old and started noticing symptoms about 2 years ago. I've under gone several tests, but all tests show that dysferlin is present and functioning. I have 4 brothers and one of them (a year older than me) is also developing symptoms. I only seem to have issues with toe walking as my calf muscles have wasted away to practically nothing. My brother, however, mentioned burning sensations around his knees, which I'm wondering if this is perhaps the beginnings of the crazy bending of the knee. He has also mentioned issues with tip-toe. I would be interested in keeping up with your mother's progress, as she seems to be on the same path of progression I'm heading towards.
>
> I'll stop rambling now...
>
> Donna
> --- In dysferlin@yahoogroups.com <mailto:dysferlin%40yahoogroups.com> , "louiseneedham21" <louiseneedham@> wrote:
> >
> > Hi I'm Louise, this is my first post.
> > I don't have LGMD, but my mum has suffered with it for about 25 years now. Interestingly, she only started to show symptoms during her first pregnancy, aged 28. Now at 53, she is making the transition from walking sticks to wheelchair, but hopefully she won't be completely dependent on the chair.
> > I'm trying to find out more information, because my mum has one of the rare types of LGMD where her dysferlin function is normal. It is not known what gene mutation causes her condition, but they assume it is recessively inherited and that me and my sister will not be affected. My aunt is just starting to show symptoms now, at 56 and going through menopause! I was just wondering if anyone knows anything about it, or even knows someone that has this.
> > My mum has a lot of muscle wastage on her thighs, and when she walks her knees bend back at a horrible angle. However, her arms don't seem to be affected. Like most of you, she can't stand on her tip-toes and falls over a lot.
> > Any information would mean a lot,
> > Thanks, Louise.
> >
>
>
>
>
>
>
>
>
>
> __________________________________________________________
> Beyond Hotmail - see what else you can do with Windows Live.
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2a.

What to Say, Shopping etc. <http://groups.yahoo.com/group/dysferlin/message/477;_ylc=X3oDMTJwM3E1aDRmBF9TAzk3MzU5NzE1BGdycElkAzMzNzY4ODEEZ3Jwc3BJZAMxNzA1MDYxNzc2BG1zZ0lkAzQ3NwRzZWMDZG1zZwRzbGsDdm1zZwRzdGltZQMxMjQwNDAwNjU0>

Posted by: "Christina Ray" okchristinabelle@yahoo.com <mailto:okchristinabelle@yahoo.com?Subject= Re%3AWhat%20to%20Say%2C%20Shopping%20etc%2E> okchristinabelle <http://profiles.yahoo.com/okchristinabelle>

Tue Apr 21, 2009 6:51 pm (PDT)

Hello everyone. I haven't posted in a while and I always get nervous when I do. I guess because I'm afraid I can't convey what I would like to. With that in mind I have a couple of things to comment on.
Louise had commented on how great this group is and I have to second that motion. It's comforting to know that other people are going thru the same thing. I feel like I have gotten more information about this condition from this group than from all the other sites I have come across.
What to say to folks that ask...
I can't recall any strangers asking about my condition when I'm just out and about. I was in the hospital last month for a hystorectomy, and that was the first time I have been around folks that didn't know what was going on with me. I found myself wanting to tell them all about what's happened to me in the last two years. I live in a pretty small town in Southeast Oklahoma and I see that my Friends and "Friends" don't really know what to say. My best friend told me not to long ago that it just freaks her out and she hasn't been around much because she doesn't know what to do. I was up running around, taking care of my dad, who has MS, hiking and just out and about all the time two years ago. Now I am unable to stand by myself and am in a wheelchair all the time. I have pretty much gotten over the whole thing, but I don't think my friends have.

On a more positive note...I went shopping for clothes today for the first time since being in a wheelchair. You have to look at clothing much differently when you shop to be sitting down....It was a bit of a chore, but my wonderful boyfriend helped me and I got a few new outfits.

One last thing. I mentioned a while back that you never see people in wheelchairs on game shows. I was watching the Price is Right the other day and lo and behold....they called a woman in a wheelchair.

I'm going to do the genetic testing with the Jain Foundation as soon as I can get everything coordinated.
Okay, that's all I have to comment on in this posting. Ya'll take care.
Christina


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2b.

Re: What to Say, Shopping etc. <http://groups.yahoo.com/group/dysferlin/message/478;_ylc=X3oDMTJwazBrczVyBF9TAzk3MzU5NzE1BGdycElkAzMzNzY4ODEEZ3Jwc3BJZAMxNzA1MDYxNzc2BG1zZ0lkAzQ3OARzZWMDZG1zZwRzbGsDdm1zZwRzdGltZQMxMjQwNDAwNjU0>

Posted by: "Miriam Mejia" mmejia_28@yahoo.com <mailto:mmejia_28@yahoo.com?Subject= Re%3A%20What%20to%20Say%2C%20Shopping%20etc%2E> mmejia_28 <http://profiles.yahoo.com/mmejia_28>

Tue Apr 21, 2009 11:05 pm (PDT)

Bex,
I'm not the only one!! Yes I have a boyfriend but I feel that if I am in a wheelchair, it would change everything! including him, and i know that i do not for a fact know this but i am paranoid because i do not want to be a burden on anyone. i feel like i wont be able to go out and have fun so that worries me and because if this fear, i feel like its taken a toll on my relationship. Your words are inspiring and couldn't have come at a better time. (thanks)
You have very good points and i appreciate your honesty. thanks again,
Miriam

________________________________
From: Christina Ray <okchristinabelle@yahoo.com <mailto:okchristinabelle%40yahoo.com> >
To: dysferlin@yahoogroups.com <mailto:dysferlin%40yahoogroups.com>
Sent: Tuesday, April 21, 2009 6:50:42 PM
Subject: [dysferlin] What to Say, Shopping etc.

Hello everyone. I haven't posted in a while and I always get nervous when I do. I guess because I'm afraid I can't convey what I would like to. With that in mind I have a couple of things to comment on.
Louise had commented on how great this group is and I have to second that motion. It's comforting to know that other people are going thru the same thing. I feel like I have gotten more information about this condition from this group than from all the other sites I have come across.
What to say to folks that ask...
I can't recall any strangers asking about my condition when I'm just out and about. I was in the hospital last month for a hystorectomy, and that was the first time I have been around folks that didn't know what was going on with me. I found myself wanting to tell them all about what's happened to me in the last two years. I live in a pretty small town in Southeast Oklahoma and I see that my Friends and "Friends" don't really know what to say. My best friend told me not to long ago that it just freaks her out and she hasn't been around much because she doesn't know what to do. I was up running around, taking care of my dad, who has MS, hiking and just out and about all the time two years ago. Now I am unable to stand by myself and am in a wheelchair all the time. I have pretty much gotten over the whole thing, but I don't think my friends have.

On a more positive note...I went shopping for clothes today for the first time since being in a wheelchair. You have to look at clothing much differently when you shop to be sitting down....It was a bit of a chore, but my wonderful boyfriend helped me and I got a few new outfits.

One last thing. I mentioned a while back that you never see people in wheelchairs on game shows. I was watching the Price is Right the other day and lo and behold....they called a woman in a wheelchair.

I'm going to do the genetic testing with the Jain Foundation as soon as I can get everything coordinated.
Okay, that's all I have to comment on in this posting. Ya'll take care.
Christina


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