Working with a good Doctor

I mentioned earlier that I had found several good doctors and a great therapist.  I have an internest that I see now every six months to make sure I am doing ok and to have my blood work done.  The first time I saw him I was pretty much given up finding a doctor that cared more than just 5 minutes.  I had seen the staff at the MD clinic and had heard everything they said before.  I could not find someone that was willing to listen to how my body was feeling.  Sure I have MD, I know I am supposed to feel sore and have all the MD issues.  I am not talking about how I felt with my MD.  I am talking about how my body over all felt.  I felt lit crap and I know there had to be more going on besides MD.  I was the first MD patient Dr. S. ever had.  I was about willing to give up ever finding a doctor that was interested in me and not my MD.  I told him how crappy I felt all the time.  He listened and said – well it is time to figure out if anything else is going on.  He did a full blood panel on me and found that I had other things going on that would cause some of the symptoms I had.
My testosterone level was so low that it did not register
My Vitamin D level did not register
My thyroid was barely working
My Vitamin B barely made it on the charts.
There really were other things going on besides my MD.  Who know if it is all tied together, but the body is so unique that I feel everything is related.
I started on testosterone, thyroid medicine and all the different vitamins I could find. I also take pain killers twice a day and a muscle relaxer twice a day.
Physically I feel better than I have for a sometime. 
Get yourself a great Dr. who is interested in you and who is willing to do research on your illness.

Falling Down and getting Back up

One of the reasons I started using a canes was because I started to fall down.  Another problem I had was the continuous increase in the weak feelings in my knees and hips. Usually when I fall down my hips go out of place.  The joint at the iliac and sacrum moves and at times gets hung up and will not come back.  When this happens it is very uncomfortable and I need to see the PT.  Using slow manipulation and stretching she has always been able to get it back into place. 

There are nights when I come home from work and I am so sore and in so much pain that I just go to bed.  It is hard to make others see how much you hurt.  I don’t like to be a whiner so I usually keep it to myself.  Most days I just feel like retiring.  If I could win the lotto!! 

Figuring out what works for me.

I started having other issues that are related to having MD that no one told me about.  I was feeling really tired and so sore all the time I could barely sleep or even get around.  After a year from when I was diagnosed I started using a cane.  I have this really cool cane I bought from the Cold Steel Company.  It is a self-defense weapon and a cane.  Handy capped people are a high risk assault group.  It is a replica of an Irish walking stick.  It is awesome! 

I found a new Dr. that was willing to listen to me and attempt to figure out what was going on with the rest of my body.  He did a full blood Panel on me the same day.  He found that my thyroid was not working at all; my testosterone level did not even hit the chart.  And my D, E and B levels were way off. He started me on medicine for my thyroid and vitamins supplements as well as testosterone injections.  It wasn’t miraculous but I did start to feel better. I also began to work with my Dr. on pain management.  I was just taking medicine when I hurt real bad.  After about two years of trying to be tough and suck it up. I realized it was not worth not sleeping at night.  Now I take a muscle relaxer and a pain killer twice a day.  Once in the morning and once at 6 PM; that way by the time I was ready for bed I was able to relax enough to sleep.  I told my neurologist that I take a muscle relaxer and she acted like she never heard of that before.  It works for me. 

I started seeing my PT once a week for a deep tissue PT treatment.  She also puts my hips and spine back into place when I fall.  She uses manipulation that is slow and easy.  There is no snapping and cracking.  She is the best.  There have been times when I have fallen and my hips will rotate and not come back into place on their own, and she can fix them.  One time I fell and a rib dislocated and started to rub against my scapula.  She fixed it!  She is the best.  If you live in North Eastern Illinois she is worth seeing.

I have good days and bad days.  Most days are good.  It is not easy to be positive all the time.  But you know what?  You do not have to be!

Learning to adjust my life.

I honestly had so many different feelings I had to figure out.  I was grateful that it had waited until I was 49 to really start causing me issues. I was mad that it was happening to me.  I have always been active, working in the yard, the house, my hobbies, lifting weights. 

It was all new and I had no idea how to proceed with my life.  I was told by one Physical Therapist that I could keep on exercising.  So I kept on lifting heavy weights.  The pain became so bad that I could barely get out of bed.  I went back to the PT and told her I was having so much more pain.  I told her I was still lifting weights and that I was not feeling any better.  She then told me that I should not be lifting heavy weights.  I left and found a new PT.  I started seeing a PT that worked with me when I fell and compressed my T12 vertebrae. At that point I gave up lifting weights and started swimming.  I hate swimming!  It is the most boring exercise next to a rowing machine.  But it helps a lot.  I don’t go everyday but I do try to make it at least three times a week.  The problem I have is that I am too tired and sore when I get up that I can barely get into the shower (Hot Water) is the only thing that loosens my back up enough to get to work.  Lunch time is often two crazy and after work I am more tired than in the morning. When I lifted weights I had a buddy that I would lift with.  It was easier to stay motivated.  Swimming – no one what’s to be a swimming buddy? Hey! Want to play Marco Polo? Lame!

Diagnosis

I scheduled an appointment to meet with the Internal Medicine Doctor that I had been seeing for about 10 years.  She suggested that I go and see a Neurologist and a Rheumatologist.    

The Rheumatologist I found was great.  The first thing she did was a full blood panel to determine what may show up.  The blood panel showed a high level of creatine kinase, an enzyme that leaks out of damaged muscle. When elevated CK levels are found in a blood sample, it usually means muscle is being destroyed by some abnormal process, such as a muscular dystrophy or inflammation. Therefore, a high CK level suggests that the muscles themselves are the likely cause of the weakness, but it doesn’t tell exactly what the muscle disorder might be.

The Neurologist ran several tests including an electromyography.  This tested the electrical activity of the muscles and nerves in my body. These test showed major reductions in the transportation of electrical activity.

Next I had a biopsy done to get enough tissue to send away for diagnosis of the type of Muscular Dystrophy I actually have.

During this time I had my first visit to the Muscular Dystrophy Client that is part of the University of Illinois Medical Center in Chicago.  The group there was very helpful.  I met with

respiratory  therapy, physical therapy and the doctors that are part of the Neology department that run the Muscular Dystrophy clinic.

At this point in my life I had only read a few thinks about MD and was overwelmed by the many different forms of MD there was.  I was scared to death and pretty angry.  I learned that the type of MD I have does not effect the heart and that it is not as fast moving as many types of MD.

Figuring it out!

I have been told by my Doctors that I have always had Muscular Dystrophy.  I am the fourth boy out of six children.  All my life I played sports.  I was always slower than my brothers, but I could play baseball, Soccer, and football fairly well.  When you play sports you have injuries.  I have always contributed my week knees to the multiple knee injuries I had playing sports.  In my late thirties and into my late forties I lifted weights and did yoga to stay in shape and keep my weight down.  When I was 45 years old I started to fall down alot and have a lot of trouble getting up off the floor while doing yoga.  No reason, just make a turn to quick, down I would go.  I also started to have a lot of pain in my lower back and knees when I would weight lift.  I thought that my old knee injuries had finally reached the point where I needed surgery to clean up what was messed up. 

I went to see my wife’s orthopedist to have X-rays done to determine what the plan of action was going to be.  Looking at the X-rays the Doctor pointed out the excessive buildup of fat around my knees.  The X-rays did show cartilage damage, but the concern was with the fat buildup around my knees.