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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 me

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"





I have been working on another site where I have a blog which is one of the reasons these pages have not been updated recently. If you have questions or suggestions please post them there http://www.godstunes.com/blog/?cat=13

These are the symptoms my remedy is currently based on.
Case Mar  2007
Chief 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 right).

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 out).

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 help.

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 now).

More details about progression over time to follow



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 space.

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, maybe metallic.

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.

Timeline

I can't remember being sick much when I was a kid.

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 that.

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 the doctor.

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 the flu)

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 anyone.

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 every weekend.

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 rooms.

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.
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