Well....it's not....

 ....Lupus. Haha, that makes me laugh :-)  

Today was a follow-up with UT Physicians Neurology.  The morning was marked with a trip to Southern Maid Donuts for our favorite breakfast tacos made by filipinos.  All of this was preceded by an odd night of sleep....

We usually wind down in the evening by watching "LOST" in bed.  We are nearing the middle of season six, and let me tell you things make much more sense the second time around.  After the nightly episode, I roll over and turn on the "rolling thunder" setting on the sound machine and begin the nightly routine of trying to go to sleep.  This usually begins with the quest to find the right position that is not going to make my right leg burn.  

Maybe this is a pinched nerve and might be completely unrelated to what is actually causing all of the muscle wasting, but regardless if I'm laying flat on my back my right leg starts in with the "pins and needles." Within a couple of minutes the "pins and needles" turn into the "firey flames of frickin' hell."  I'm not kidding, it hurts a lot.  

After finding the 37.4346 degree angle that allows for me to lay somewhat on my back, I have a conversation with my Maker.  Lately I've been asking for patience.  I don't ask for a cure, I sometimes ask for less pain - but patience is what I need more than anything.  Last night I made my peace with the world and finally drifted off.  Somewhere around 3am I woke up in horrific pain.  

Rachel was in the process of waking me up when I was coming to in a scream.  My leg was burning from the hip to the tip of my toes.  I had apparently settled into "burning leg" position and was there long enough that by the time I woke Rachel with the shaking of my leg it was the most debilitating pain I had felt in a long time.  We both quickly went back to sleep, but that is something I'll never forget.  We woke up at 6:30am and it continued to burn 'till about 9:30am.  

I have come to many conclusions in the past week, the most important being that pride could be the end of me.  Well, not really the end of me but it could take away from my quality of life.  In one of my previous posts I mentioned that I have been prescribed AFO's.  Ankle-foot orthotics are braces that provide support that my wasted muscles can no longer give me.  Most look silly, but their utility is very important.  Because of my lack of musculature my body has begun to compensate for its lack of balance in relatively destructive ways.  

By the end of the day my right ankle hurts quite a bit and my left hip makes me feel like an arthritic ex-football player.  I just feel beat up.  I walk with a cane to help out with the balance and although they are cut to my height specifications, we homo sapiens really aren't supposed to walk with them.  It throws off the natural movements and "swing" the human body utilizes to achieve efficient use of energy.  The fatigue is amazing.  EVERYTHING hurts.  It causes headaches on top of it all.  I get through the day just fine but massages are necessary to feel somewhat refreshed in the morning.  

Until two days ago, I hadn't given in to the idea of braces.  It felt like admitting defeat.  I get enough looks from being so young and using a cane that having braces just seemed like it would garner stares as if I had a second little baby head spouting from my shoulder (sorry, I'm watching Buffy the Vampire Slayer and as you can imagine you see some crazy stuff on there - my imagination went weird).  I can usually follow their eyes down to my legs as they investigate my terrain.  My legs are REALLY thin and the rest of me...well...isn't :-)

I've done so much research on the possibilities of what could be doing this to me.  Regardless of what it is, my legs are shot and they cannot be repaired.  All I can hope to do at this point is build up what I DO HAVE and use that to provide strength and safety.  I have to prepare for my surroundings; I don't take steps off the curb without slowing down and looking at my feet and the ground below.  My knees have buckled more times than I can count in the weakening of my lower legs that my right knee now hyperextends rather than offering the slightest give that would put me flat on my face.  If I could make things easier for myself, why wouldn't I?

I spent about half a day in front of the computer learning about the different options available to me in the forms of braces.  Anyone can actually go into a medical supply store and pick up a pre-fabricated brace.  They run pretty cheap from what I've seen, between $75-$200 per leg.  Being a cheap-ass has applied to me in many aspects of my life.  I own one pair of shoes right now - mind you I've been waiting to see what was going to happen with my feet before I purchased new dress shoes (as I mentioned in a previous post, my feet no longer fit in them).  Despite being a life-long fan of MetallicA, I've never paid the $50 it costs to join their fan club.  All of this being said, I looked at those braces and thought to myself, "Those are not going to be good enough."  

Apart from needing something to straighten out my ankles and in turn my knees and in turn my hips, I really need something to provide me the energy I just don't have anymore.  Many testimonials from people with similar life-situations read like this - "I've spent years in the plastic braces and most of them didn't do anything for me but keep me out of a wheelchair." There are lots of stories about how they live with constant back pain, the large amounts of pain medication they take to counteract the nerve, muscle and bone damage they have endured.  All of it sounds so depressing.  So I kept reading...

...and eventually I came across places in Las Vegas and California that fabricate carbon-fiber or graphite braces.  Because of their make up, when they flex they actually provide energy return.  This means they push back against the ground much like your foot would.  You've seen things very similar on television when watching the Olympics.  When the segments on the Special Olympians are aired, many of the runners profiled that have lost their leg(s) wear prosthetics very similar to these braces.  Sounds a bit space-aged, but I'm a geek and this is very intriguing to me.  I have read the price tag on these braces are upwards of $5k per brace.  They are covered by insurance and I would just have to meet deductible and then I would have to pay about 20%.  Not too shabby.  I have located a partner to Dynamic Bracing Solutions here in Houston and will be making an appointment very soon.  They may not feel I am in "need" of these particular braces, but I guarantee you I will not settle for anything but the best I can have.  I will preserve my quality of life the best I can.  

Rachel and I went into UT Physicians this morning armed with as much knowledge and as many questions as we could gather.  It was a busy day in the office and I had never seen so many patients around.  That being said we were seen only 30 minutes after my scheduled appointment time.  We awaited the results of blood testing and nerve and muscle testing and we sure they were going to tell us that we had nailed the diagnosis down to Charcot-Marie-Tooth...BUT...no.  We weren't the only ones surprised.  

Dr. Sheikh: We were very surprised to see that your nerve conduction studies are normal.  Very normal.  When she (the neurologist that did the EMG testing) called me she told me that and I said, "WHAT???" This moved CMT down the list and it's not likely that is what is causing this.  It is either a motor neuron problem or a muscle disease.  

Confusing the best neurologists in Houston is exhausting.  Just when they tell me they are sure I have one thing, we then find out that it wasn't what they had me pinned as.  The next round of testing includes more DNA work. Athena Diagnostics called me today to let me know they are sending me a kit - then I head on down to a Quest and have them to the blood draw.  We are going to rule out some pretty serious stuff: Lou Gehrig's Disease and Kennedy's Disease.  When I told my Mom this, she said - and this made me laugh heartily - "Honey, if you had Lou Gehrig's disease you'd be dead by now."  My age of presenting symptoms would be a bit too young and I'm missing some key aspects: bladder and bowel control issues, breathing and swallowing issues, sexual disfunction.  They ask me these questions every single time I go into the doctor.  

If those are ruled out, we then move to biopsy the muscle.  I'm also going to have a MRI of my neck.  Due to my neck pains and stiffness, we are going to see if there is anything going on there.  

So, we're back to square zero.  Time for a little more poking and prodding.  

-Lee