"My name is Keith Hayes 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."
The Keith B. Hayes Foundation | A component fund of the Community Foundation of Orange and Sullivan
The Community Foundation of Orange and Sullivan is a 501(c)(3) nonprofit organization.
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The Community Foundation can be reached by calling 845-769-9393