Keith's Words

and I am 20 year s old. I live with my  parents and have attended a local community college for the past two  years and am looking forward to transferring to a local college this  Fall in which I plan to live in one of the dorms. However, I am moving  into this experience in a way that maybe I knew would one day happen,  but not now. You see, I am now wheel chair bound and can’t walk with  shoes on as I need to curl my foot around in a claw like position in  order to walk by myself.

 As of January, going to Rockland  Community College, one day, my knees just locked on me. I had to call  for security and for my dad to come and get me. I have been for awhile  now walking with my hands in my pockets to better stabilize me, but this  was something I never had experienced! I went to see my neurologist Dr.  Darryl DeVivo, at Columbia Presbyterian who heads up the Muscular  Dystrophy unit. He told me I had something like tendonitis and it was  temporary. He was obviously incorrect in his diagnosis. However, I need  to back up once more. I have an undiagnosed skeletal and muscular  progressive myopathy that is not muscular dystrophy in name, but can  mimic symptoms. I also have heart involvement and see Dr. Daphne Hsu,  who is a pediatric cardiologist at Columbia Presbyterian as well. My  heart is enlarged and was first diagnosed when I was 15years old. I have  luckily been asymptomatic and so we don’t know how long I have also had  myopathy of the heart, but up until this May of 2007, had been stable  at the same size.

 This time, it was slightly enlarged when I  went for my yearly echocardiogram. My meds stayed the same which is  coreg and enalapral with the same dosage and was told to return in a  year, unless I start to feel differences. In fact, except for my knees, I  feel good. But, that is my problem! My knees are now swollen, which is  something new, they turn dark reddish purple, and it seems like my knee  cap is scraping bone and feels squishy inside. I am told that my quads  and pelvic muscles are very weak (given a rating of 2 by Dr.Bostrom,  knee surgeon at Hospital of Special Surgery in NYC) and that my muscles  can no longer hold me up for walking. Yes, this is an adjustment, to say  the least, but I am in 24/pain as if I have toothaches in both my  knees, keeping me up at night and no doctor seems to be able to help me.

 My  parents have taken me to see several doctors at both Columbia  Presbyterian and Hospital of Special Surgery-may they be different  neurologists, orthopedists and a rheumatologist and knee surgeon. Nobody  seems to be able to help me. That is why we are now coming to you. I  guess I should also include that up until I was 4 ½ years old, I was  relatively healthy. But as my mom mentions, if you now put the pieces  together, maybe something was brewing. I had to have my baby teeth taken  out when I was 2years old and we now know that I have osteopenia and  take Fosomax since I was diagnosed with weak bone density when I was a  teenager and see Dr. Weiss a pediatric endocrinologist. I also had  constant strep throat for several years and then went to NY Hospital to  have my tonsils removed only to come down with a staph infection and  then needing intravenous antibiotics of vancomycin for 10 days.

It  was then discovered I was allergic to penicillin and had then developed  Epstein Mono with temporary liver involvement. From age 4 ½-6th grade I  would run 10 day fevers sort of like a bell curve of starting low-grade  and then reaching 104ish and then slowly going back down. Before my  tonsils were removed, I was getting sick almost monthly for a year. My  mom always asked doctors what was wrong as I had been very chubby before  I started getting sick at 41/2. I started not to run too fast and would  tire easily when I would walk long distances. My dad would put me on  his shoulders and everyone thought I was spoiled, but my mom now thinks  it could have been related.

I was tested for all different things  and always, everything would come back negative. I was tested for  immunity diseases at Long Island Jewish Hospital, Crones disease and  everything else you might think of. But, nobody suggested seeing a  neurologist until I was in Junior High School. I had just noticed that I  no longer could get up without assistance on the floor and then I fell  down our stairs as I wasn’t watching. My dad had me x-rayed and that was  then they discovered my weak bone density. I then went to see a doctor  at Columbia Presbyterian to see if I wasn’t digesting my foods and had  gluten sensitivity. He was the doctor who first suggested we see a  neurologist.

At 15, I was then diagnosed. I then had a muscle  biopsy and the electrical probes in my legs. It was told to me that I  had muscle weakness in all parts of my body and that I had droopy  eyelids which  everyone thought was like my grandpa’s who lived to be 90  and didn’t have anything but spinalstinosis.

I want you to know  that I am a fighter. I go on the internet always trying to find doctors  and solutions. I have thought of knee replacements and other types of  surgery and am always told that cannot help me. I am just beginning to  take in the fact that I need to regain my independence and need to use a  better wheel chair and need a van that I can drive so I can regain what  I have lost in the past few months. This is hard, but the hardest thing  is that my knees are only getting worse each day with swelling,  discoloration and most importantly pain.

Mayo Clinic will hopefully be able to give me some assistance, where nobody and no institution, to date have been able to."

Keith Hayes