|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
much of that information could be located easily.
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 Friedrich'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 me
If you read as much as I have from the conventional
medical field you tend to lose hope of a treatment or
My feelings are do as much as you can. I never accept
what the doctors tell me and I do things they say I
can't do. My younger brother never let his condition
stop him as long as he could keep going he did and
attempted things even I didn't consider.
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"
received my order of Naltrexone on 3/12/09. Making the
LDN and performing a personal trial. It may not be
scientific as far as the medical establishment is
concerned but it will work for me. Learn all about LDN
I will post my progress here starting 3/13/09 so check
back often. I also maintain an ongoing log broken down
by month. You can get to that from the main MD page
12 2009. Received my order of Naltrexone today and
made up my LDN. Took 2.5ml at 11:30pm.
Wasn't doing well today before taking it. Woke up
with a headache, ears ringing loud. Still weak and
feet hurting. Will see if things start improving
Fri Mar 13 2009. Got up a little earlier today.
Legs seemed weak. Left hand hurting and ears still
ringing. Have a place on lower lip that almost
feels like a cut (probably because of some bread I
ate). Took 2.5ml of LDN about 11:30pm.
Sat Mar 14 2009. Got up about the same time as
yesterday even though it was very late when I went
to bed. Had a headache when I woke up, it was
rainy out and my guess is the humidity was high,
headache went away after moving around. Legs weak
when I got up but maybe just a little stronger
than yesterday. Lip feels like maybe it's getting
a blister (took a dose of Nat Mur 30c). Left hand
sore like I re injured it during the night. Nat
Mur seemed to help the lip. Took 2.5ml LDN about
Sun Mar 15 2009. Woke up same time as yesterday
but went back to sleep for a couple of hours. Had
a headache when I did get up. Legs seemed weak
when I first got up but got a little better later.
Ears still ringing. Took 2.5ml LDN about 11:30pm.
Mon Mar 16 2009. Got up around the time I had been
getting up. Legs felt weak still. I figured I
would try something. I have a friend who is a
Kinesiologist so I asked him to test for dosage,
he said .5ml so tonight I will reduce the dosage
to .5ml and see if there is any difference. Took
.5ml LDN about 11:45pm.
Tues Mar 17 2009. Got up about an hour earlier
than yesterday. It doesn't really feel much
different but I seemed a little better about
standing up today (a little more balance). I hope
that continues. Took .5ml about midnight.
Wed Mar 18 2009. Went to bed about 3am, seemed
easier to get into bed as I felt a little
stronger. Could not go to sleep, bed was cold so
feet felt cold but was a normal thing since heat
was off, was still awake at 7am. Only slept about
3 hours and still found it easier to get up. Left
hand still gets sore and ears are still ringing.
Very upset stomach late today, feel like I need to
throw up. Will take .5ml about 11:45pm.
Thurs Mar 19 2009. Woke up a couple of times sick
to my stomach last night. Got up today with upset
stomach, a headache and feeling very weak. Have
felt bad all day. Sinus drainage and ears still
ringing. Took .5ml about 12:45am.
Fri Mar 20 2009. Didn't wake up sick to my stomach
last night. I did however wake up to urinate and
had trouble going back to sleep. Strength seems to
be coming back some. Arms and shoulders are very
sore. Stomach feels empty with pressure but
haven't been able to have a stool. Stomach started
feeling bad again after eating. Headache in back
of head left side. Took .5ml about 12:00am.
Sun Mar 22 2009. Felt bad yesterday, threw up
early yesterday morning and felt sick to my
stomach all day yesterday, sore eyes and headache.
Had not digested anything I ate Friday so I only
had a bowl of soup and some water yesterday.
Finally started feeling better early this morning.
Took .5ml LDN about midnight. Still seem to have a
little more leg strength and ankles not turning as
bad. Legs still stiff and knees have a tendency to
lock. Have been noticing a strange taste in my
mouth and it may be from the LDN. Took .5ml about
Mon Mar 23 2009. Didn't sleep much last night.
Legs still felt a little stronger today. I changed
the way I take the LDN, with the bad taste and
burping I think it may be a result of taking it
straight (it tastes pretty bad) so I'm putting it
in a drink now. I went and read about LDN again
today and it seems most people seem to have a
fairly quick response to it so I increased my dose
to 1.5ml about 11:30pm.
Tues Mar 24 2009. Right foot was cold last night,
left was warm. Right foot also hurt a little when
laying on left side. Got up early. Legs are still
stiff. Tail bone feels raw. Didn't notice any
difference in leg strength. Took 1.5ml LDN about
Wed Mar 25 2009. Feet were warm when I got in bed.
Right foot still hurt a little. Leg strength about
the same. Stomach felt empty when I got up. Took
1.5ml LDN about 11:30pm.
Fri Mar 27 2009. Right foot was warm, left cool to
the touch but didn't seem cold. Right foot hurt
from touching the bed, almost like it was too
heavy. Slept late but it was easier to stand (I
think my legs may be a little stronger). Ears are
still ringing. Took 1.5ml LDN about 11:30pm.
Sat Mar 28 2009. Feet were warm last night but
foot still hurt when I lay down. Woke up with
sinus congestion and headache. Difficult to stand.
Ears ringing loud. Bad case of gas today. Took
1.5ml LDN about 12:15am.
Sun Mar 29 2009. Got up to urinate twice in 4
hours and just stayed up after the second time.
Legs seemed stronger still. Stomach has been a
little uneasy all day. Eyes kept getting sore and
have had some sinus pressure. Took 1.5ml LDN about
Mon Mar 30 2009. Covers felt heavy on legs last
night. Got up with a bad headache today,
sinus and stiff neck. Right knee locked up and
gave out when I tried to put weight on it. Ears
ringing very loud. Went up to 2ml LDN about
Tues Mar 31 2009. Slept late. Legs felt a little
weaker when I got up. When I put feet down while
sitting they started bouncing. Had a headache when
I got up but it went away. Took 2ml LDN about
Thurs Apr 2 2009. Didn't sleep much last night.
Kept getting up to urinate. Legs still seem
stronger than they had been before but no real
difference so far in any other way. Still taking
2ml LDN every night.
Sat Apr 4 2009. Slept late today and woke up with
headache and stiff neck, sore spot in left calf.
Legs didn't feel as strong today but still wasn't
as bad as I had gotten used to. Still taking 2ml
LDN each night.
Mon Apr 6 2009. Slept late today, had trouble
getting to sleep last night. Arms sore today and
didn't have much energy. No change with legs.
Increased LDN to 2.5ml.
Mon Apr 13 2009. Past week haven't seen much
happen that I can tell. Legs about the same, if
there is any difference it's so slow I don't
notice it. I have noticed my legs sticking
straight out when I sit down (that was happening
frequently 2 or 3 years ago). Increased LDN to 3ml
Tues Apr 14 2009. Woke up sweating again today.
Feet had sensation of being cold last night but it
was in line with how they felt to the touch (in
the past the sensation was always off). Left foot
and right hand was getting cramps tonight.
Sun Apr 19 2009. Having trouble getting to sleep
at night. Have had my back hurt me all day a
couple of days ago. Get hands cramps and foot
cramps now and then. Leg strength seems to be
about the same, I do however find myself more
willing to do things, not a big change but some
difference. Still on 3ml LDN.
Wed Apr 22 2009. Having trouble sleeping. Stools
have been a little more regular. Legs may be a
little stronger. Feet hurt at night. Still on 3ml
Wed Apr 29 2009. Last couple of days legs have
been weak when I get up in the morning but improve
a little later. Increased LDN to 4ml Mon Apr 27.
Stomach gets very sore by mid day and have to have
a stool to ease it up.
Tues May 5 2009. Still taking 4ml LDN. Last night
legs were cold from the knee down (worse on right
leg), back hurt, right side. Have not been able to
have a good stool for about 3 days even though I
feel pressure and have the urge to go. Skipped
taking LDN the other day to see what happened (had
a rough day so I went right back to it), even
though I can't tell that much it must be helping.
Have a great deal of trouble standing etc. when I
first get out of bed but the leg strength does
seem to improve after being up for awhile. Seem to
have more feeling in my legs.
Wed May 20 2009. Skipped LDN for about 3 days to
see if anything would change. No difference so I
checked today and started out again at 1.5ml.
Wed June 17 2009. It has been about a month since
I last posted. I keep forgetting to take the LDN
and I'm not sure it's because my body was saying
not to take it. I was told by a doctor once that
when you don't need the remedy you will forget to
take it. I started practicing muscle testing on
myself to check dosage. I had determined the other
day 2ml so was taking that dosage. Hadn't noticed
any increase in leg strength, I did wake up
earlier a couple of days and still had some
trouble sleeping. Today I checked myself again
because I slept late and yesterday my left foot
felt likle it was burning on the bottom and left
foot kept jerking, ankles were swollen. Test
indicated a dosage of 2.5ml so that is what I took