Friday, May 25, 2012

Updates and Upcoming Events

As you may be wondering what happened at my appointment with the Neurologist, I thought I should fill you in.  I'm happy to say there was no electricity involved (other than the lights in the ceiling, of course,) and somewhat disappointed to report that I actually went to the appointment and not out shopping instead...which would always be my first choice!  I ended up quite sore afterward, as every initial visit to this type of doctor includes strength tests (pull as hard as you can on my hand...try and lift your leg as I push down on your knee, and so forth...) so I am glad it's over.  Two muscle relaxers and four Tylenol later,  and I've recovered quite nicely!

And although I didn't get to spend money on 'stuff I don't need', overall it was a productive day.  There seem to be some options for my future, which is always a plus...sometimes with CMT, you aren't left with any options.  I could do one of two things...either I can throw caution to the wind, and just have a blood test for type 2A (he thinks there is a good chance that's the type I have,) or there may be some researchers in Rochester who would take me on as a case study and run all the blood tests for FREE.  The downside is they may require me to have the NCV test before this happens, as part of the case study.  I have to check and make sure that's ALL they would require, before signing on the dotted line.  Meanwhile, the Neurologist assured me he would only have to test a couple of areas, which would certainly be different from the NCV tests I had as a child...back then there were so many electrodes hooked up to me, I could have lit up New York!  So I am waiting to hear about the Rochester researchers to see if that's even a possibility, before I make my final decision.

In the meantime, our next Art de Cure/CPO gallery event is coming up!  This is our lighter artist's reception called 'Pieces of Me' showcasing our latest gallery, installed on March 23rd.  I must say, it is an impressive sight...a lot of work was put into this installation, and I'm excited to celebrate!  If you're looking for something interesting to do on Friday night, June 1st (from 5--8pm,) stop on by the CPO building at 149 South Lake Avenue, Albany.  Light food and wine, great art, and an opportunity to meet some wonderful local artists...what could be better than that?  And thank you once again to everyone that helped make this gallery possible...especially you, M!  Have yourself a big glass of wine on deserve it!  I already know of a bunch of people who plan on coming, so it should be a lot of fun...and maybe we'll sell some art and raise more money for the CMTA, which is always our goal.  Hope to see you there!

Monday, May 14, 2012

Decisions, Decisions...

So here is my current CMT related dilemma...because as I've learned the hard way, you just can't go through life having this disease without a situation or two cropping up!  In a couple of days, I have my first consult with a local Neurologist.  That really isn't the dilemma, though just that word 'Neurologist' strikes a chord of fear inside me.  And yes, I know that isn't quite fair...but it's a fact I live with, because of many bad experiences I had as a child with doctors of that particular profession.  The same could be said for 'Dentists' and (had I ever been to one,) I'm sure 'Proctolotist' would follow right behind...if you'll forgive my pun!

I am going to this new Neurologist for two reasons: because my friend M recommended him, and assured me he has had experience with CMT patients...I trust her, so I took the steps and made the appointment.  The second reason is because I still don't know what type of CMT I have, and this is something I would like to know.  I took further steps to assure that I would actually show up to the appointment; I asked my father to drive me, because I easily get lost...and because he won't turn the car around and speed home (as I might be inclined to do myself.)  And when their office called on Friday to confirm that I was keeping the appointment, I gripped the phone hard and forced myself to say "Yes."  Believe me...these are all very tiny and very necessary steps I have to take, to make sure that I am sitting in the Neurologist's office come Wednesday afternoon!

Why am I so scared?  There is one main reason: a Nerve Conduction Velocity Test, or NCV.  This is a lovely test, designed to determine the adequacy of the conduction of the nerve impulse as it courses down a nerve.  When there is a decrease of the speed of impulse, or in other words, a decrease in how quickly and how well your nerves respond, it indicates a nerve disease.  Sounds a little confusing, but not too bad, right?  Oh...did I forget to mention these things are tested with ELECTRICITY???  That's right!  And let me tell you--someone with perfectly functioning nerves would most likely cry during this test.  Someone like me feels a level of agony that's hard to even describe...and when your disease progresses, it takes longer for your nerves to respond.  Which makes the test take even longer, and become even more EXCRUCIATING.

There is one other reason, though, that lurks behind the memories of this painful test I experienced as a child...and this reason probably makes me more angry than scared.  It took me 12 years to get a diagnosis for my symptoms, which started showing up at age 13.  For five years after my symptoms started I suffered through this test, and no diagnosis was ever given.  I was never sent for any blood tests in an attempt to determine why my nerves weren't responding, and nothing else was ever done except for this terrible test, once a year...on and on I went, never knowing what was wrong with me.   As cruel as this test is, if there's a goal in mind I can understand the need for it...if the purpose is to determine what blood tests should be done, in order to find some answers.  It bothers me that any Neurologist would ever conduct an NCV test, without having these goals in mind...though I am a perfect example that it happens.  I have tried to let go of this and not group all Neurologists together, because I know that is ridiculous...there are good and bad in every profession.  Though so far I have failed in letting this go, and showing up for this consult is my first attempt to rectify it only hurts me to hold onto negative feelings.  I will keep working on it, and continue to raise awareness of CMT, in the hopes that such situations happen less and less often for others with this disease.

But in the meantime, I am still faced with my dilemma...whether or not to have this test again.  There are good reasons for having it, such as the fact that the results might provide me with certain terms like "Conduction velocity isn't normal" and "Amplitudes decreased" that would point me in a direction for future blood tests.  Because each blood test for CMT costs about $900, and there is no guarantee my insurance will cover any of that.  When I finally had my first blood test at age 25, I found out I had CMT, but not type 1A (the most common).  What kind I had remained a mystery.  If I have the NCV test and those words are in the results, it points very strongly to me having type 2A, and I can just be tested for that type to get confirmation...and if I have 2A, that's a good thing--because type 1A and 2A are both being studied right now in the hopes of finding a medication to stop their progress.  And I can now have the NCV test with Valium, which is another plus...though there is no guarantee I won't suffer painful aftereffects, as other people with CMT have reported.  If I am lucky, this Neurologist will have other options for me and other tests I could do that might give me some direction, which will help narrow down future blood tests.  If he doesn't, I have a choice to make.  Do I suffer through the NCV test in the hopes that it will point me in the right direction for future blood tests?  Do I just have the blood test for type 2A, knowing it might come out negative, and I'd still have to keep searching?  Or do I convince my father to skip the appointment altogether, and take me shopping instead?  Hmmm...I kind of like that last one!

I guess I have to make that first step and hear what this man has to say, weigh my options, and go with my gut.  I know one thing for sure...once and for all, I am determined to find out what type of CMT I actually have.  I spent a lot of years NOT knowing anything about why I was different, and the feeling didn't sit right with way or the other, it's time for the mystery to be solved.  In the meantime, I'll be crossing my fingers (and toes) in the hopes that I get the answers I want!