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 cure.
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
it here
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"
August 2008
Trying something new
called MMS this month. Haven't noticed much so far.
Fri
August 1 2008. Feet were warm to touch last night but had the sensation
of being cold, mainly right foot around toes. Legs still very stiff.
Couldn't get comfortable all night. Having some problems with neck
today, sometimes burns when I turn my head. Feet have felt like they
are burning at times tonight (probably swollen some). Taking Merc
tonight.
Sun August 3 2008. Had trouble going to sleep, legs cramped when I put
them straight in bed. Ankles turning when I stand (worse without
shoes). Itching today. Taking Sul tonight.
Mon August 4 2008. Couldn't get to sleep last night (feet felt cold and
head sore from laying on the pillow). Woke up today with a headache
(eyes and back or head), stuffy nose and stiff neck. Headache kept
getting worse with nausea. Tried to take a nap but bladder got full as
soon as I lay down. Haven't had a headache this bad in quite awhile.
Finally started easing up about 10:30. They always seem to get better
around midnight but I'm still extremely tired.
Tues August 5 2008. Neck was a little stiff when I got up today and
eyes still a little sore with a pain in right eye at times but nothing
compared to yesterday. Nose still plugged up. Ears have been ringing
louder than usual since yesterday. Legs still weal, knees won't bend,
get dizzy when I stand.
Wed August 6 2008. Slept late, woke up with pain is left side of neck
in back. Feet had sensation of being cold last night. Ankles turning
today (worse left). Feet aren't swelled anymore. Legs still very stiff
and ears still ringing very loud.
Thurs August 7 2008. Ordered some new stuff the other day called MMS.
It came today, I took a larger dose than they normally suggest but
based on some research I was doing I decided to try that route since a
little nausea doesn't scare me (I get it everyday anyway). About 15
minutes after taking it my feet started getting a burning sensation.
I'll keep tabs on any changes.
Fri August 8 2008. Took a second dose of the MMS before bed. Feet had
sensation of being a little cold but felt warm to touch. Had to get up
once to urinate. Woke up earlier than usual and got up. Went down to
the normal dosage of MMS today, took it twice, feet seemed to tingle a
little while after first dose. Seemed to get a little nausea late today
but it didn't last long.
Sun August 10 2008. Feet were ice cold all night (kept me awake). Up to
4 drops of the MMS twice a day now. Stools smell strong and are a
little easier to pass. Haven't noticed any major changes yet.
Tues August 12 2008. Feet were ok last night but full bladder woke me
up 3 times and was bad all day today. Got up earlier today. Legs still
weak and sore, right ankle turning bad. Was up to 6 drops of the MMS
twice today. Has a loose stool today.
Wed August 13 2008. Left leg hurt all night.Legs very weak today, ears
ringing, tired and no energy. 7 drops of MMS.
Fri August 15 2008. Legs hurt last night (I think hips are out).
Bladder was difficult to hold for a couple of days. Legs feel weak when
I stand. Up to 9 drops of MMS twice today.
Sun August 17 2008. Legs have been itching at night (from insect
bites). Stomach pains today (felt like a ball in stomach, center just
below ribs), some burning (acid reflux). Right ankle turning bad when I
would stand. Left leg hurts when I stand (feels weak). 11 drops of MMS.
Tues August 19 2008. Right ankle turning bad when I stand. Sinuses bad
and ears ringing very loud. Went up to 15 drops of MMS and got nausea,
stomach pains and diarrhea which has lasted several hours now. Not
taking the second dose tonight and will reduce the number of drops
tomorrow if nausea is gone.
Wed August 20 2008. Still had the nausea and some diarrhea today so
didn't take the MMS today. Seems to be getting better tonight. Ears
still ringing very loud. Both ankles turning today.
Thurs August 21 2008. Stool was better today. Held off on the MMS today
too.
Fri August 22 2008. Stomach was ok today. Took 13 drops of MMS once,
will go up to twice tomorrow. Ears ringing loud still.
Sat August 23 2008. Stomach a little sore today so only took MMS once.
Electric sensation in neck last night. Got dizzy when I stood up today.
Legs still weak. Ankles turning.
Sun August 24 2008. Very stiff and sore when I got up today (stiff neck
and headache), lightheaded when I stood up.
Tues August 26 2008. Couldn't go to sleep when I went to bed last
night. Forgot to take MMS yesterday. Got up early, had an empty feeling
in stomach. Very stiff and legs sore when I stand up.
Wed August 27 2008. Forgot the MMS again yesterday. Has been raining
all week so have been stuck in the house. Humidity is high so sinuses
are plugged up, sore around eyes tonight. Stomach has felt empty all
day. Legs still sore when I stand.
Sat August 30 2008. Finally remembered to take MMS today, 13 drops and
got severe stomach cramps, nausea and diarrhea. Will wait to take more
and reduce the number of drops. Legs still weak and sore, can't bend
knees or pick feet up. Ears still ringing very loud.
Sun August 31 2008. Stomach was a little better today, stool was
firmer. Feet have been jerking today. Legs hurt some and left ankle was
hurting. Very stiff again. Ears still ringing very loud.
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