|There are many reasons for this page.
While there is much information on Muscular Dystrophy on
the internet and various other places. I wanted to
provide a place where I could talk about what I have
learned about myself.
Let me make it perfectly clear that I am neither a doctor or any other
type of health care professional. My only
knowledge comes from the fact that I have a form of MD
called Friedreich's Ataxia. I have spent some time
looking for information and possible treatments which
I will share with anyone here.
I invite anyone to share any knowledge
they may have with visitors to this site. Simply email
Do you have a poem or story? Send
I'm afraid there was no way to make
this short as there is lots of information here. Some
may apply to many people and some only to me. I have to make another point
here...I use homeopathic remedies, some people have
a very difficult time accepting that and if you are
one of the people are unwilling to consider them I
would suggest that you not even read any further.
I asked the
homeopath one day who is helping me what advice I
could give people with one of the forms of MD? His
answer was "Get to a
good homeopath as soon as possible"
These are the symptoms my
remedy is currently based on.
Case Mar 2007
complaint is legs feel weak and balance is bad,
can't pick feet up. Drag toes when I try to
walk. This is constant. Had the problem from the
time I was a teenager but it gets worse as time
goes on. (Nothing seems to make it better)
Started having to go from one handhold to the
next seemed to drift to the right as I walked.
For many years I got around by walking with my
wife holding hands. A curious thing is as long
as I had some reference (a wall to touch or
something to hold onto I could walk or stand).
If I close my eyes I can't tell if I'm standing
straight or leaning and I'll fall, normally
forward and to the right then when I try to
compensate I'll pitch backward.
This problem is constant. Naturally it is worse
when I'm tired and I'm tired just about all of
the time. I usually get out of bed more tired
than I was when I went to bed. Weak ankles,
can't put feet down flat and ankles turn so I'm
stepping on the edge of my feet (worse on
I do get depressed at times. Just down and can't
seem to get myself motivated to do anything.
Like writing this up (I finally forced myself to
start on it today or it would have stayed on a
back burner and I would have kept putting it off
even though it is very important to me).
Ears ring constantly. (Have had it for as long
as I can remember, my mother was deaf in one ear
and she always told me her ears rang all the
time too). Some days it's so loud I can't hear
much else. Seems to be internal. If I plug my
ears the ringing is still just as loud. May get
worse with nasal congestion or humidity it's
hard to tell because I think I'm getting used to
it. It feels like I have something in my ears
most of the time like a hair or some dry wax (it
tickles/itches and normally can't get anything
Stay up late everynight then have trouble going
to sleep when I do go to bed. Covers feel heavy
on my legs (like I'm stuck and can't move legs,
sometimes causes and uncomfortable
pain/pressure). Feet feel cold at night in bed
(cold to the point of pain) yet if I touch feet
they may just feel a little cool so it's just a
sensation (in the past they would actually be
ice cold so that is a little different).
Sleep on right side with knees bent and pulled
up some (have not been able to sleep on my back
or stomach ever that I can remember, I try to
lay on my back and the neck stiffness gets worse
and I get a bad headache). Put hands between
knees to relieve pressure (feet and ankles feel
like they are raised a little and hang down
causing pain and discomfort). I constantly pull
feet to bend knees more and knees crack then I
push one foot back down. I have to keep feet
apart at night or they hurt if they are touching
and my toenails scratch the other ankle or leg
(I have some pretty bad scratches from it).
Frequent urination. It's not such a problem when
I can hold it but many times I can't. Wasn't as
bad when I was younger because I could get to
the restroom (now it takes me longer to get
there), this comes and goes, a dose of Equis low
potency will help if it gets real bad.
Have stiffness in the back of my head and neck
everyday when I get up. Usually doesn't get to
the point where I can't function anymore (it
used to). When it gets really bad Silica will
Lately have had a problem with stools. Stomach
gets very sore and it alternates between going
too much (loose, watery, mucous around the
edges) and not going enough (dry-dissoves in
water, or sticky and smells strong). Have had
the sore stomach and constipation for a long
time but the loose stools started about 2 years
ago (I moved to a rural area and have well water
More details about progression over time to
Down feeling. Not sure why...feel pushed aside,
not important, used, taken for granted. Stressed
over finances, everytime I think I'm getting
them under control something else comes up and
the pattern starts all over again.. feels like I
have the responsibility and worry about it.
Can't sleep at night and when I do I wake up
more tired than when I went to sleep.
(This one has been bothering me lately) Have
periods...like now where I sit down to do bills
and just can't seem to get to it, intentions are
good but I put it off, find other things to do,
get sidetracked. I know if I don't do it, it
won't get done. I think I let myself get
overwhelmed and I know the money will run out
long before the bills do. Not sure if it's being
lazy about it or if I just don't want to face
it. Always seem to have a feeling that it will
get worse and I feel helpless to correct it. At
times I won't even answer the phone because it
could be a bill collector.
I have never cried after my mum passed or my
brother (I have some guilt over times I wanted
to go see them and didn't while they were still
here). I handle someones death ok. Then I may
see something on tv and just fall apart and get
very emotional. Things that will affect most
people I deal with ok and overreact to something
that I know isn't even real.
I always said I had a guilt complex. I was the
kid in school who felt guilty even though I
wasn't the one who did it. I would never be able
to pass a lie detector test even if I was
telling the truth.
I never jumped from job to job, but would start
getting bured out or bored with it after a
couple of years. I made a real good employee for
a couple of years then started feeling like I
just didn't have my heart in it anymore and felt
like I wasn't doing as much as I should be doing
(no one ever complained about it, actually they
seemed to think I was doing a good job but I
knew I was wasting lots of time).
Have dark circles around eyes and eyes are sore
much of the time.
Shoes always feel too tight and area where shoes
tie often look bruised when I take my shoes off
(even if I don't tie them).
Legs jerk sometimes, in bed and sometimes when
I'm sitting in a chair.
I pull my legs up when I go to bed and knees
pop. Sleep on my side with knees bent and hands
between my knees (seems to ease the pain some).
If I try to lay on my back I get low back pain
and shoulders get tense and have trouble
breathing. Can't sleep on my stomach. Have
trouble turning over and have to sit up first.
Underwear twists and rubs and feels
uncomfortable from turning over. Turn over
several times trying to get comfortable but
usually I'm on my right side when I fall asleep
(that's the shoulder that always hurts).
Legs always feel tired. They get sore,
especially from standing. Many times I can't sit
right foot down flat (end up standing on outside
edge of foot). Happens with left foot sometimes
but mainly right foot. Knees lock and simply
won't bend, I think I hyperextend knee when
standing, if I force myself not to leg(s) will
give out and won't hold my weight. When I try to
pick something up off the floor I can't hold my
weight with my legs and I get low back pain from
bending or standing.
Curious thing I've noticed for years. I can go
uphill much better than downhill. I drag toes
and have trouble lifting feet to go up steps
etc. but I seem to be more stable. Even a slight
downhill slope is very hard for me, I feel like
I'm falling forward, balance really goes haywire
(not sure if it would be called vertigo or not).
Even sitting in a chair if I lean forward it
feels like I'm going to keep going.
I have to have something to reference where I am
in space. If I try to stand on my own I'll fall
over. Even if I'm only touching a wall I'm
better able to stand because that gives me a
reference point. Much worse in the dark because
I lose the sight to reference where I am in
Get an empty feeling in my stomach and if I eat
I feel bloated and have to have a stool because
I know I'll get the gas pains soon. I'm not real
regular with a stool, sometimes go a couple of
days without one (used to go for a week or
more). After having a stool I feel like I need a
bath (no matter how much I wipe or even if I
wash I still feel dirty).
I got bad headaches in the sun one summer when I
was about 12? Occassionally I will start to get
a headache while sitting in the sun ... it will
normally go away as soon as I get in the shade.
I always feel tired..and get exhausted from
almost any physical activity (it is a big strain
on me to do just about anything).
Seem to feel better generally outside in the sun
as long as it isn't too hot (a breeze is fine
but too much wind bothers me). Like to watch the
rain but don't want to be out in it (like the
sound the rain makes when it's hitting the side
of the house, relaxes me). Running water gives
me an urge to urinate. I get cold easily so tend
to avoid leaving the house in the winter
(dislike the cold).
I generally sweat on my forehead and underarms.
Don't use antiperspirant because they use
aluminum in it and I read once that it works by
damaging the cells so you wouldn't sweat and I
figured with my condition it could make it
worse. Also seem to sweat or stay damp in groin
area (will smell kind of sweet).
Nose has felt like it is plugged up way in the
back but nothing comes out. Sometimes nose gets
sore inside like I have a pimple inside the nose
(usually the right side). Got my nose broke in a
fight when I was about 17, put it back in place
myself, had 2 black eyes for awhile, nose has
always been a little over to the right since. A
doctor looked at it years later and said I did
pretty good putting it back.
Don't know if I have a high tolerance for pain.
I have pain but can't judge how bad it is. I
don't complain about it much and it is much
better than it used to be.
I have a fear of snakes...never liked them and
wouldn't pick one up of any species.
Very seldom drink, I know it affects me bad plus
the hangover just isn't worth it. Seem to crave
citrus so when I drink I want it mixed so it has
a sweet citrus taste.
Love the smell of coffee and have acquired a
craving for it. I drink it black and don't want
it sweet but anything else I want sweet. Coffee
used to bother my stomach, it doesn't anymore.
Get a very bad taste in my mouth, brushing teeth
helps a little but doesn't take it away
completely...not sure how to describe the taste,
I used to always get up and shower and shave
almost every morning but lately I just seem to
find reasons not to bother. Not sure if it's
depression or being lazy.
I can't remember being sick much when I was a
My mother told me once I was walking and talking
by 7 months old. Both my brothers didn't walk
till they were about 2.
When I was about 4 all 3 boys had the measles,
mumps and whooping cough back to back. One right
after the other. I had mumps on both sides.
Stepped on a broken bottle while barefoot and
almost cut my big toe off when I was about 8.
Didn't go to the doctor, I remember sitting on
the porch pouring hydrogen peroxide on it and
watching it bubble. Have no memory of it beyond
Had my tonsils out by the time I was 10.
When I was about 12 I remember one summer when I
got a bad headache every time I got in the sun.
It would go away when I got in the shade so I
spent my time outside going from one shady spot
to the next. I never told my mother because she
would have kept me in the house and took me to
Started noticing being clumbsy around 10 or 11
Aways had sinus trouble as a teenager. Seemed to
always be sore in my eyes (like when you have
Teeth were small and soft. Would always grind
teeth in my sleep.
Sometime around 10 to 13 I got very introverted
and started staying to myself. Stayed inside and
read books, when I did go outside I was alone.
Liked it when it was so foggy you couldn't see
Got my nose broken in a fight when I was 17.
Didn't go to the doctor, straightened it myself
when I got home, had 2 black eyes from it.
Got married when I was 18. Worked in a factory
and part time in a gas station.
Started getting real bad headaches just about
Had pneumonia when I was about 20, went to the
doctor and got a prescription but was
uncomfortable taking the medicine so I didn't.
Went to a Chiropractor instead. In 3 days I went
on vacation (I was still sick but not like the
doctors told me I would be).
Got stung in the chest by a wask when I was
about 21. It spead and itched, the nurse at work
sent me home and told me to go to the doctor. I
did and got medicine but it made me sick (don't
know what the medicine was) I stopped taking it
and the place cleared up finally.
Broke my left foot when I was about about 21.
Had to have a pin put in while it healed. Took
10 weeks before the cast came off and the pin
removed. I still have the scar.
Had the stomach flu when I was in my early 40's.
Went to the emergency room because I was afraid
it was my appendix. They put me in the hospital
for a week but I think it was just to fill
I don't get the headaches bad usually anymore.
Silica seems to help when I do.
Seem to have some allergies. Took a bite of rye
toast one day and my wife watched the blister
pop out in a few seconds.
I get cold sores quite often. If I take a dose
of Nat Mur quick enough they go away.