Transverse Myelitis

Just a log as I work around some medical conditions I have been afflicted by.  JJK

— A brief history.  Feeling rather healthy I started experiencing issues where I was numb from just below the chest.  Not too concerned as I had been doing some considerable work in the yard the weekend before and having just gotten back into the gym.  The region of numbness began to spread lower.  I sought medical advice, the obvious thought was a pinched nerve or disk issue.  Then my left leg became extremely heavy.  Now the simple act of walking was a chore as my left leg was not responding to the normal functions.  I began to trip and was unable to catch my balance.  Frustrated with the medical attention I checked myself into the hospital.  I laid there for about a week, a few MRIs and other diagnostic tests.  My neurologist made his diagnosis, activities were set in motion for surgery.  Luckily the surgeon decided to stop by on his way home the night before.  After performing some manual tests he conferred with his interns.  He could be overheard as he dressed them down in the hallway.  He explained that the diagnosis was incorrect.  A spinal tap was ordered but due to the swelling in my spinal chord I was sent home for rest and a rigid dose of steroids.

My father stayed with me as I rested and the Visiting nurse came to provide the steroid treatment via IV.  Due to things I am not aware of, I kept the house very cold.  My poor dad froze his butt of but never complained about it. I had the spinal tap.  Two weeks later I saw the neurologist again.  After performing similar manual diagnostic tests (sensation level guaging mostly) he basically told me that if I didn’t have a cane that I should get one.  I was told I had MS but he could not do anything until the next occurrence.

Not ready to quit, I started working with a neurologist at the Cleveland Clinic.  Again the professionals were stumped, I heard comments like "interesting" and "puzzling".  Not necessarily what you want to hear.  Several more MRI’s and then this other test where they put you on a table, tilt it back and forth to get the dye to fill the spinal chord cavity and then use fiber optics to take pictures.  Phew that was a weird one.

I was referred to another specialist, who I basically walked out on.  After some more evaluation I was told I had Transverse Myelitis.  I have to point out that the first neurologist I saw stuck with me through this and kept driving even after the guru couldn’t tell me anything.  Even when I had a hospital stay (non-TM) related he stopped by to visit.

Story over? not yet.  During this time I would have lost it had it not been for my family and loved ones.  I had an incredibly strong girlfriend who suffered through this but stayed strong.

I was told that no one knew the true cause and that this was a rare condition.  I stood there thinking I want to know more about how I recover.  I was having issues with motor skills and functions that one would consider that occur below the belt.

I did some of my own research, joined a mailing list that was specific to people who suffered from this same disease.  I encountered some great people, especially Gunny.  Being another former Marine we seemed to have an additional bond.

This was kicking my butt but I refused to quit.  It was difficult to go from being a physically active and very competitve person to what I had become.  I have never quit anything worthwhile and this was something worthwhile to overcome.

I was referred to a specialist at the Cleveland Clinic.  He did an incredible job explaining to me what I was being affected by and helping me understand what recovery was possible.  A disappointment in the system shows here…  He ordered physical rehab.  This order was sent to my neurologist and Primary Care Physician.  To date I have received no formal physical rehab.  I had several doctors, many who didn’t have a clue and a much smaller number who have worked tirelessly.


Time marches on… After a trip to Philadelphia I come home with a cough.  Very similar to the one I had just prior to the onset of my Transverse Myelitis.  This progressed to what seemed to be flu-like symptoms.  My head constantly throbbed, I was not eating and on occassion throwing up.  One day, just as I realized this is not good (yes I am stubborn about being sick), I went to go to the bathroom.  Next thing I remember was someone asking me my name and placing me on a gurney.  Thanks to strong people who where there for being there and helping me.  I remember waking up and seeing my girlfriend and not really knowing what was going on.  I spent hours in and out of it.  I remember a visitor coming and being told he couldn’t bring his milkshake into the room, right Coach?

I am placed in a new gurney and they start wheeling me out, I see my Mom and brother standing there as they wheel me out of the hospital, I was mortified.  I knew it was bad, but it had to be really bad for them to drop everything and drive out to be by my side.

A long ride in the back of an ambulance, I have to sit up every so often to make sure my family (yes you too Special K) is still following.  Fear coursed my mind and these special people kept this Marine from truly losing it.  We arrive at the Cleveland Clinic and they wheel me through a maze of hallways and bridges.  At this point I can focus a little more and try to figure out what is going on.  The nurses were great, my family never left my side, I knew I was bad.  I started to get clued in. 

The reason I passed out? my blood count was not just dangerously low, but I am told that a doctor had commented that he is not sure how I lived.  The average male operates with a 12% red cell blood count, when I was admitted my count was around 3%.

They would give me a transfusion and my body would destroy it.  They theorized that they needed to heat my body up so I had to spend a night under this god awful blanket with hot water pumping through it.  11 agonizing hours and the same results.  The experts were finally able to determine what was necessary.  I sure wish they had called Coach’s brother, he had it pinned down from the start!

Okay lets cut that short, but it is important as it helps to understand how I was hit with Transverse Myelitis.  I have a condition with my Immune system.  It does not respond properly when called upon.  The theory is, I had a CVID issue and my immune system attacked the mylein that surrounds my spinal chord, exposing and damaging the nerves in the affected area.

All of this made no sense.  I had a very normal childhood doing all the stuff boys normally do.  I spent 7 years in the Marine Corps, running marathons triathalons, jumping out of perfectly good flying apparatus and diving into strange waters and eathing all kinds of critters, and other than an issue with my platelette counts when getting prepped for a rotator cuff surgery I had never really had health issues.  Linking it all back it seems that I have had such a condition for quite some time, but my physical conditioning kept it from truly arising.  My life slowed down and I became vulnerable.

I now face being sensitive to getting sick much more than the average person.  The lingering issue is my Transverse Myelitis as I have suffered from its lingering issues.

It is time to document the ongoing progress as I work through this.

Windows Live Tags: Transverse Myelitis, TM

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