Re: [Myotubular_Myopathy] From: Toni, 15th October 2003
Here is a link to our site. <a
href="http://www.wtv-zone.com/mdaww/indexzep1.html">Wide World of MD</a>
Let me know if you have problems linking to it.
I know I had some trouble with sending emails to an aol addy and also a
friend of mine at aol says hers to me keep coming back to her.
Sorry to hear about your uncles passing. Never an easy time to lose
someone but the holidays make it especially hard. Cancer is such a
I hope your dad is doing better. Did they figure out what was going on?
Please be proactive with your health since there is a history of heart
problems in your family. I stress this point to my son since his sister
passed away due to complications linked to the xmtm.
You are so right about maintaining a positive attitude. I am a firm
believer in you need to make the best of what you have. I know I used to
get embarassed when I would fall or struggle going up stairs. I guess
being in the chair now is easier cuz ppl see right off there is
something wrong. Where we live also the ppl are most helpful and
friendly. If they seem uncomfortable I will say hi and then they will
You are so right about certain products being toni/pat proof. I have to
have my husband open anything marked child proof. lol I just hand them
over instead of trying to struggle with them.
When I first started to try and find out information on mtm it was few
and far between. I know when I found your site I was thrilled. Up until
then I had not met anyone with a dx of myopathy. I had linked to this
site earlier too but there was not much activity. I was glad to see when
the list picked up. Also that there are adults on the list. I have had
trouble finding any adults to speak with about having md much less mtm.
I wish I would have known you back in '90. My girlfriend and I took a 23
day trip to Great Britain and Ireland. I am Scotch, Irish, English,
German and Bohemian. Thus the interest in GB and Ireland. I did not know
at the time I had md. While we were on our trip I fell 6 times. In
Oxford I fell down some stairs at a car park and broke a bone in my
foot. I hobbled around the rest of our trip not knowing it was broken.
This was only 4 days into our trip. I have since met a few ppl with
children who have a type of myopathy from England. I had thought this
could be the link as to where mine came from. However, my dad is the one
who is Scotch, Irish, English. He had the blood test and it came back
normal. We suspect it was my mom's side cuz she had some of the same
symtoms I do. She passed away in 87 before we were dx'd. She had another
heart attack and went in her sleep. Another reason I go in for yearly
checkups for my heart and get after my son to do the same.
How is your new 'superhuman wellies' working out? I get the
burning/cramps in my legs too. Do you take any medication for the md? I
take mestinon, baclofen and until recently I had also been taking
neurontin for some nerve damage in my one leg. Does anyone else take
meds for their myopathy? I found out on the increased dosage of
neurontin I got ulclers on my one leg again. For the last two months I
have had a nurse come in twice a week and wrap it. A couple of years ago
when they tried to increase the neurontin I got the same thing. They are
especially bad this time but the proform wrap is the only thing which
will clear it up. I will continue to have it wrapped for at least
another month or two.
It seems to me on other lists I have seen where ppl mention their child
also has one leg shorter than the other. I want to say everyone has this
but not sure. It seems to me quite a few with a myopathy have it and a
lift seems to be the only thing which helps. Anyone have any more
Looking forward to hearing from you.
take care pat
- Hi, Pat!
I want to tell you that evrything I have read from you
about how you are experiencing mtm is so familiar to
me. Your descriptions exactly describe my mother!
She is weaker in her upper body than in her lower
body. She had problems with falling down, eventually
couldn't do stairs by age 32, and now, walks with a
cane (very slowly)- she is 60. She has had burning/
numbness in her feet for over 20 years. She has one
leg shorter than the other. She has the cuffed boots
that inflate at intervals, rhythmically. She uses
CPAP at night due to her airway closing in when she
sleeps. She has always had a fear of drowning. She
gets her legs wrapped every mornig (due to swelling)-
she can barely move them when she doesn't get them
wrapped. She is obviously a carrier (since I am one).
Every time I read more things from you, I immediately
call her up and tell her. But, she is skeptical. She
is very overweight, and all the medical people (and
society- especially the media) have beat it into her
head that all of her problems are caused by being
overweight. I know the weight exacerbates the
problems, but it doesn't CAUSE them!
I, also, have experienced a few things: when I was
little (grade school), I used to fall down a lot for
no reason- no one could figure out why. Eventually I
"outgrew" this, I guess, since I don't do it anymore.
Also, 5 or 6 years back, I was given neurontin to help
with some pain/ burning I was experiencing in my legs
and feet. It was found that I have nerve damage in
both of my feet and lower legs. I was diagnosed with
peripheral neuropathy. As far as the legs go, I stay
in a constant state of pain- burning, tingling,
cramping, aching, or they are constantly numb. One
or the other, and they switch back and forth all the
time, and it is not preempted by anything- I cannot
predict which way they will be, I just have wait and
see. Most of the time, there is a general stiffness
that I experience. I also am noting that the older I
get, the more strength I lose in my upper body. I
have always been really strong, but lately, I have
noticed that there are times when I can't open a jar
or pick up things that I have always been able to
before. I think that this is all very
interesting... Blessings to you! Godspeed.
--- redscootee@... wrote:
> Here is a link to our site. <a
> World of MD</a>=== message truncated ===
> Let me know if you have problems linking to it.
> I know I had some trouble with sending emails to an
> aol addy and also a
> friend of mine at aol says hers to me keep coming
> back to her.
> Sorry to hear about your uncles passing. Never an
> easy time to lose
> someone but the holidays make it especially hard.
> Cancer is such a
> devastating disease.
> I hope your dad is doing better. Did they figure out
> what was going on?
> Please be proactive with your health since there is
> a history of heart
> problems in your family. I stress this point to my
> son since his sister
> passed away due to complications linked to the xmtm.
> You are so right about maintaining a positive
> attitude. I am a firm
> believer in you need to make the best of what you
> have. I know I used to
> get embarassed when I would fall or struggle going
> up stairs. I guess
> being in the chair now is easier cuz ppl see right
> off there is
> something wrong. Where we live also the ppl are most
> helpful and
> friendly. If they seem uncomfortable I will say hi
> and then they will
> speak back.
> You are so right about certain products being
> toni/pat proof. I have to
> have my husband open anything marked child proof.
> lol I just hand them
> over instead of trying to struggle with them.
> When I first started to try and find out information
> on mtm it was few
> and far between. I know when I found your site I was
> thrilled. Up until
> then I had not met anyone with a dx of myopathy. I
> had linked to this
> site earlier too but there was not much activity. I
> was glad to see when
> the list picked up. Also that there are adults on
> the list. I have had
> trouble finding any adults to speak with about
> having md much less mtm.
> I wish I would have known you back in '90. My
> girlfriend and I took a 23
> day trip to Great Britain and Ireland. I am Scotch,
> Irish, English,
> German and Bohemian. Thus the interest in GB and
> Ireland. I did not know
> at the time I had md. While we were on our trip I
> fell 6 times. In
> Oxford I fell down some stairs at a car park and
> broke a bone in my
> foot. I hobbled around the rest of our trip not
> knowing it was broken.
> This was only 4 days into our trip. I have since met
> a few ppl with
> children who have a type of myopathy from England. I
> had thought this
> could be the link as to where mine came from.
> However, my dad is the one
> who is Scotch, Irish, English. He had the blood test
> and it came back
> normal. We suspect it was my mom's side cuz she had
> some of the same
> symtoms I do. She passed away in 87 before we were
> dx'd. She had another
> heart attack and went in her sleep. Another reason I
> go in for yearly
> checkups for my heart and get after my son to do the
> How is your new 'superhuman wellies' working out? I
> get the
> burning/cramps in my legs too. Do you take any
> medication for the md? I
> take mestinon, baclofen and until recently I had
> also been taking
> neurontin for some nerve damage in my one leg. Does
> anyone else take
> meds for their myopathy? I found out on the
> increased dosage of
> neurontin I got ulclers on my one leg again. For the
> last two months I
> have had a nurse come in twice a week and wrap it. A
> couple of years ago
> when they tried to increase the neurontin I got the
> same thing. They are
> especially bad this time but the proform wrap is the
> only thing which
> will clear it up. I will continue to have it wrapped
> for at least
> another month or two.
> It seems to me on other lists I have seen where ppl
> mention their child
> also has one leg shorter than the other. I want to
> say everyone has this
> but not sure. It seems to me quite a few with a
> myopathy have it and a
> lift seems to be the only thing which helps. Anyone
> have any more
> Looking forward to hearing from you.
> take care pat
> ATTACHMENT part 2 message/rfc822
> To: <Myotubular_Myopathy@yahoogroups.com>
> From: "Toni Abram" <toni.abram1@...>
> Date: Sun, 23 Nov 2003 11:56:24 -0000
> Subject: Re: [Myotubular_Myopathy] From: Toni, 15th
> October 2003
> Hello Pat
> Firstly, thank you for sending me your story - I
> didn't have any problems with it initially but when
> I came to add it to the site yesterday I experienced
> problems. I will try again today.
> When I referred to Christmas this year being strange
> I was thinking of my uncle who died from Cancer on
> Tuesday. His funeral is tomorrow afternoon - I know
> there is never a good time to die but I think
> peoples emotions run a lot higher at this time of
> year and I am a bit wary of the next few weeks. I
> didn't see my uncle that often but it has been
> horrible hearing about the way that the Cancer takes
> hold and I would defy anyone, even with the coldest
> heart not to be moved by the events of the last few
> On top of this, Dad spent Thursday in the hospital -
> he had pains in his chest and he was kept in by the
> doctors for an ECG, blood tests and x-rays. At the
> end of it all , the doctors said there was nothing
> wrong with him - I suspect it is stress but my
> grandfather had angina so it is not something to be
> taken light heartedly.
> Mostly, I am very positive about this condition.
> The way that I look at it is that I can't do
> anything about it, so I should just get on with it.
> If I hadn't been given a diagnosis I would have been
> carrying on as I did for the first 28 years of my
> life. The one thing the diagnosis did for me is
> stop me beating myself up nearly so badly when I
> can't do something. Stairs are becoming very hard
> work for me and I am always coming home with items
> from the supermarket with child proof packaging,
> which is also Toni proof. Toilet cleaner, sink
> unblocker and mouth wash are the worst culprits.
> When I was very young the doctor thought I had one
> leg shorter than the other. There was talk of
> fitting me with a caliper but that never happened.
> Looking back, there does seem that there were signs
> with me that there was a problem. I didn't walk
> until I was 18 months, I had bad asthma that kept me
> in hospital a lot, I used to go up and downstairs on
> my bottom but the symptoms don't appear to have been
> put together or were considered sufficiently mild to
> be ignored.
> I would be interested in reading the articles about
> sleep studies and co2 build up at night. I will
> take a look for them after I have finished writing
> I have been having a burning / tingling pain in my
> left thigh / knee for a couple of months now. It is
> mostly at night, although over the last few days I
> have noticed a dull ache during the day as well.
> The physio has given me what I have already started
> to refer to as my superhero wellies. They are like
> boots which are attached by a hose to an electric
> box. The box can be set to different pressures and
> once it is switched on, the boots expand and
> contract around the leg which I think is meant to
> help with my circulation - I think the belief is
> that the pain may be cramp or circulatory. Anyhow,
> I shall give them a shot and see if I notice any
> improvement. Apparently both are a side effect of
> muscular conditions.
> I agree with you about people with this condition
> being the best the best advocates. It is
> unfortunate regarding the whole signature line
> policy on this site, which I hope will not prevent
> people getting the support they need but I guess it
> is something with which we will have to abide. This
> site has really taken off over the last couple of
> months - 131 people have posted here in November,
> there were only 3 in October 2001 and only 32 in
> September of this year (for 4 months of this year
> the postings were not even in double figures).
> From my own personal experience I understand that
> when you are first diagnosed there is a hunger to
> find as much information and speak to as many people
> as possible. Also, I know that my understanding of
> the other forms of this condition is very limited
> and I felt there were others who could provide
> better and more practical help than myself.
> I linked to this site earlier in the year as I have
> done to Jessica's and as I will do to yours, because
> I wanted people to have all the best possible
> information at their fingertips in one place and not
> to have to spend hours searching for it.
> When I was first diagnosed, I turned to the internet
> for help and struggled to find information, largely
> due to the fact that I was diagnosed with
> Centronuclear Myopathy. Once I discovered that the
> condition was also known as Myotubular Myopathy
> things became easier and I found the Myotubular
> Resource Group. Now, four years on there is my
> site in the UK, several sites in America and now
> Jessica's in Australia for people to turn to.
> Looking forward to hearing from you Pat.
> ----- Original Message -----
> From: redscootee@...
> To: Myotubular_Myopathy@yahoogroups.com
> Sent: Monday, November 17, 2003 6:24 PM
> Subject: Re: [Myotubular_Myopathy] From: Toni,
> 15th October 2003
> Here it is, my story:
> Story</a> Let me
> know if you have problems getting it.
> I know what you mean about life having a way of
> taking over. I try to
> stay positive but some days life gets the better
> of me.
> Yesterday for example...it was raining and a damp
> cold. I don't think
> there were many parts of my body that was not in
> pain. When it gets to
> be that bad it is hard not to have a down day.
> I hope your Christmas will be a nice one and not
> strange. Why do you say
> it might be strange?
> Working for a big company can have its advantages
> as well as not. It
> seems here in the states they can always find a
> loop hole to try and not
> do the right thing for the employee. Baxter had
> been downsizing for the
> last 3 or 4 years before I went out on disability.
> Living with the
> unknown was a constant stressor. So when my doc
> said no to the work
> situation I was relieved in a way. Can you see if
> you can make someone
> aware of the role playing and going up two flights
> of stairs. It sounds
> like they would be open to hearing from someone
> who is affected by it.
> Yes there are days I sit and cry too. I mostly do
> it when I can't
> accomplish something I think I should be able to.
> Then after awhile I
> get over it and put things in perspective that I
> can't always do what I
> think I should.
> The doc found my one leg was shorter than the
> other. I had a special
> lift made for my shoe. It fit best in my sneakers
> so I started wearing
> them to work even. After getting the lift I did
> not fall as much.
> I do fatigue easily. Especially if I do more than
> my every day routine
> then everything is harder to do. You need to see
> about a sleep study if
> you are waking up tired or with a headache. You
> might need to check on
> your co2 level build up at nite. Sometimes means
> you would have to use a
> bi-pap or c-pap at nite. I have some articles on
> my site about it you
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It does seem that with mtm there is a pattern of symtoms. The only thing
to remember though is that each case is different and can progress
slower for some and faster for others.
First off I am also overweight and I KNOW it exacerbates the mtm but it
is NOT why I have the symtoms I do. Hey I don't need the doc to point
out I could stand to shed some pounds after all I am not blind yet. lol
I am the one who has to cart this excess baggage around with me
This is JMHO but it sounds like both you and your mother are manifesting
carrier of mtm.
I use myself as a measuring stick for my son. I look at myself at his
age and see he is going to be worse off than I am. He is 28. He has a
very prounounced gait when he goes up stairs. Looks like he has to drag
his body along each step he takes. I used to have to go up steps one
step at a time always leading with one foot and then brining the other
one up. Heaven forbid their was not a rail I could not get up would have
to lean on someone for support. I used a cane before I went out on
disability in 95. I initially went out on disability due to the
congenital break in my back. However now I cannot walk more than a dozen
steps without my husbands help and then it is very difficult.
I am 52 and am in a chair all the time now. I can get into and out of
the bathroom by hanging onto things. Am absolute dead weight if I fall
and cannot get up at all on my own. I have to almost have my legs locked
under me before I take on my own weight again. When last I was able to
do stairs I would put my one foot on the next step up hang onto the rail
and my husband would pull me up using my other hand.
If your mom would like to email me direct feel free to give her my addy.
You can use this one or I am on the one at our site lots of times. It is
I have the nerve pain, spasms, cramps etc. in my legs too. Can be very
annoying especially if it wakes me up at nite. I was on neurontin but
the both thimes they bumped up the does my leg has gotten really nasty
ulcers so I am off of that for good. I have heard from several other ppl
who have had a bad reaction to neurontin also. I take baclofen,
mestinon, and lortab for the md, nerve pain and cramps. Nothing they can
really give me for the nerve damage besides the neurontin. I guess like
you and your mom we have to suffer. Do you ever get the reaction from
ppl they are surprised having md that you are in pain? I get that quite
often here as well as ppl saying too bad you have MS. GRRR! (S) What
tests did they run on you and your mom if any for the md and the
take care and God Bless
Look forward to hearing from you.