Wednesday, August 10, 2016

unexplainable

So....I had the EMG test on both legs and feet last week - but mainly to test the nerves and muscle function of my right foot and figure out what is causing the persistent parenthesis/neuropathy (numbness).  After the initial appointment with the neurologist and his repeated questioning of my sanity, I was admittedly nervous going into this appointment.  I didn't want to hear anything from him on that subject again and I determined to stand up for myself a bit more this time if he pushed it.

At first he didn't; I thought he did, but he didn't.  He asked sort of out of the blue, "How is your anxiety?" and I think I snapped back a little too harshly, "I DON'T have anxiety!  That's NOT something I deal with!" - if you know me, you know I'm pretty even-keeled, but this was just too much and I was so frustrated and nervous (short-term...different than long-term anxiety) - he looked up and said, "Oh, well, I know.  The reason I ask is because you updated your medication list and said that you have recently been going off of some of your meds and this one in particular...it can make some people have anxiety issues when they come off of it."  I apologized and then told him, no, I've been fine and thought how thankful I was that it's been a very smooth transition coming off of a lot of the medications that have "held my Lyme riddled body together".

He then asked if I'd ever had an EMG test done to which I replied, "NO" and then briefly described it - electrodes and shocks which are moderately painful and he kept saying I could stop whenever I wanted - but no way!  I wasn't there to NOT finish a test, no matter how painful it was - I wanted answers.  Then the second half involved multiple insertions of needles into different muscles to "listen" to them and "hear" their functionality. This part was painful too, and again he kept giving me an "out" by saying I could stop whenever I wanted to.  I don't know why he did that, but I kept with it because like I said, I was there to get answers and I can handle pain.  My right foot and leg for sure felt so much different as far as the intensity of the sensation of the shocks and needle pricks. So I was sure there would be some sort of abnormal result.

But then he read the results right then and there and said, "Well, you're normal. There is absolutely nothing wrong with your nerves...which is good!"  Yes, praise God nothing is wrong with my nerve.  He believes there will be no lasting damage because he can't find anything wrong.  Machines don't lie....right?  Anyway, I expected him to dig deeper since I am still experiencing numbness.  But I got a surprise.  The next words out of his mouth were, "You know how I feel about Lyme - I don't believe in it - so this ankle thing - it has NOTHING to do with Lyme...NOTHING."  Pretty lofty words for someone who admittedly didn't even test for Lyme in all the blood work he ordered.  I'm not saying that would have shown him anything, but I think it was pretty wrong of him to make a blanket statement like that.  He then showed me to the exit.  I stopped in the hall and he turned around to see why I wasn't walking with him anymore.

I said, "So, if everything is normal, how do you explain the numbness?"  He just matter of fact said, "Well, some things are unexplainable.  Unfortunately, this is just unexplainable.  But at least you know your nerve is fine.  So I guess I'll sign off on 4 more week of physical therapy, but then you should stop and I guess we could see how your foot responds then."  Then he showed me the door.

So in a way, yes, I'm relieved because, according the the machine, my nerve is apparently functioning just fine!  Yay!  But, I'm still symptomatic and we have no idea why.  I just remember thinking afterward - "Story of my life -- unexplainable symptoms."  Could it be related to Lyme?  Maybe.  I am going to see my Lyme doctor this week and we'll see what they make of all the blood work and test results and an in person physical exam.

It may just end up remaining filed under - "mysterious" - and it may leave just as mysteriously as it arrived.  We'll see.

Keep us in prayer.  Thanks.

Wednesday, August 3, 2016

crazy?

Well, it's been a bit over 2 months now and the numbness in my foot has not changed at all.  However, I have more mobility and strength in my ankle and foot due to continued physical therapy. I just can't say enough good things about my physical therapist and the team that works with me. (A little more on that later)

It became very clear early on that I needed to see a neurologist.  Almost right after my first week of physical therapy, the physical therapist gravely looked at me and frankly told me that my foot was not behaving in any way that was NOT neurological and she recommended a very good neurologist she knew of that she believed would help.  So I made an appointment right away and was seen the following week.

The appointment was encouraging and discouraging.  Unfortunately, (for not the first time in my many years of doctor's office visit experiences), I was questioned more than a few times about my mental state when he saw "Lyme" stamped on my intake form.  But to be honest and thorough and for him to get the whole picture and really figure out what was wrong with my foot, I felt he needed to know everything.  Unfortunately, it led to the majority of the appointment him using phrases like, "have you seen a psychiatrist?" (more than once) and making me feel small.  But, finally, after referring him to my Lyme doctor and trying my best to explain some given Lyme symptoms and how they affect the body, he moved on and did take my foot seriously.

I mean, there really is no way to fake a numb foot - he really tested that out and - you just can't fake numbness.  When needle prick is done and you can't feel it, and other little tests are done, I think they figure out that you aren't there seeking attention for attention's sake.  You're there for help!

Sweet map on my foot

They drew a nice little map of the numb area on my foot and came up with a plan of action - an EMG test to be done in August (this week in fact), blood work to test for just about everything, and continued physical therapy.  I think I counted 17 vials of blood taken at my draw? Yikes!  And then I had to go back the next day for another blood test that took 3 hours and involved 4 more draws.  I'll get the full results and explanations when I go in this week for my EMG test (a test that basically maps your nerves and muscles and their functionality).

All marked up
While over the last two-ish months, nothing has changed in terms of the numbness of my foot or the mobility of my last 3 toes on that foot, I will say that the physical therapist is A.M.A.Z.I.N.G.  She is not only focusing on my foot - she's noticed that years of being sick has made my whole body weak and has gently worked on getting my body back to a place where it can build up stamina and gain energy from gentle exercise.  And through it all, still no seizures.  I started on a recumbent bike for 5 minutes.  Now I'm on a treadmill for 10-15 minutes, not to mention the myriad of other exercises I do.  It's given me confidence to branch out and do light exercises on non-therapy days.

I'm not totally healed from Lyme&Co. yet, but this is huge stuff, guys!  Being able to exercise without completely falling apart is pretty great.  I still get worn out and I still have to parcel out energy for the week, but I can tell I'm getting better and my body is getting stronger.  It's a good thing.

So next thing up for prayer is that darned EMG test this week and the results of my blood work.  Thanks, everyone!