Second, I have been trying to figure out how to describe the visit in an understanding and charitable manner. I was already frustrated by this appointment before we went to get the wrong MRI. Then, after the MRI fiasco, I'd been in a state where my perspectives are not distant enough to be fair. The mind games of Limboland kept me hopping circles too closely around the issue! I will leave out names, but I still want to be logical and kind.
Finally, I do not want to come across as ungrateful at all. Truly, I am quite thankful that whatever this is my body is struggling with isn't worse than it is. I've seen worse, and I don't prefer it.
Not long after the appointment, I wrote some letters to my prayer buddies, explaining how things went and how I was feeling. These are excerpts from those letters. For the sake of those blog-visitors who are sensitive about religious topics, I've tried to keep the information here somewhat mild in that respect. However, my faith is a huge part of who I am, and I learned at a young age that it is best to lean on God. So, I truly cannot write on such a personal thing without including Him. So be it.
Letter Excerpt (names removed); written not long after the appointment. Comments with brackets were not in the original letter, but are there for blog purposes:
***
I don't even know what to ask you to pray for, I guess. I'm coming to you because I think you'll understand, and maybe you and God can be chatting about it over the next few days.
The impact of the health issues from 2012 was enough after a while that I decided to take the GP's advice and proceed with an MRI. However, when searching for whether or not it is MS, you need a certain kind of MRI or you're wasting your time and money. My hubby had been doing a lot of research on MRIs, but we felt we needed an understanding from an MS specialist on exactly what strength and type of MRI to request. Then, with an order in hand, you can shop around the U.S. for places to get that particular kind of MRI for the least amount of money. In other words, we're trying to save ourselves and our insurance company some moula, since some companies charge $400 for the same MRI for which others charge $8000. It pays to actually travel to the location where the $400 ones are given.
So, anyway, on Wednesday, we went to go see an MS specialist. I don't know whether it was this perspective about the MRIs (perhaps not patronizing his associated hospital), our knowing a little more than the average "just fix it, please" patient (which seems to bug some docs), or he wanted to see someone with "real" problems and he felt we were wasting his valuable time, but something was up. The guy was rude at certain points in our conversations. That is, when we did see him; a med student saw me the majority of the time. In fact, at one point, when the actual specialist was there, I felt fairly under attack. I'm glad it was me rather than someone less used to lawyer-in-your-face interrogations, but....well, crikey, I'm the most discouraged and baffled I've been in the 20+ years I've been struggling with whatever this is my body is enduring. Even if I am used to uptight or pompous doctors, I was crying several times on the way home, the next day, and am actually depressed now (very unusual for me). I felt a little like he was agreeing to order an MRI just to get us on our way.
I guess, if you would, please pray I can gain His perspective some more, be clear-headed on what to do now, and accept His help in climbing back up out of the doldrums. The most baffling thing is that I've basically made myself pretty educated about m.s. and the nervous system over the years, via books, Internet, visiting with people in person and online about their experiences, etc. Not only have I felt like said education has helped me feel like my symptoms aren't that bizarre after all, but it finally gave me a direction for self-treating it a bit with the supplement routine and avoidance of certain things (heat, stress, caffeine, etc). In fact, I've been feeling so much stronger since 2012 (but not as strong as I was before 2012) and have been working on my balance, strength, movements, etc that I was fairly thrilled that I did so well on the in-office neurology tests this time. However, that very success and the idea that my MRI and spinal tap in the 1990s and the MRI about 8 years later being all normal led him to say that not only did he think I don't have m.s. (nearly 0% chance) but that what's going on with me isn't neurological at all. He did say my symptoms were "bizarre." [I knew I shouldn't have told him about the lightning bolt phenomenon when I was in bed that time. (grin) Though, interestingly, I see from the appointment write-up (which you can request, gang), he wrote that I have never experienced Lhermitte's sign. I didn't know what that was called until long after this appointment.]
He even squinted his eyes at me and asked, "What are you doing here?!" I was a little taken aback by the way he said it.
I asked, "What do you mean?"
"You have pain. Have you ever been to a rheumatologist?"
"No." [In my head, I'm thinking, "I had all those tests in the 1990s. Why would I go down the expensive road of going that route when the tests determined it wasn't anything arthritic nor to do with rheumatology?" But, I didn't say anything because the notes I'd brought said I'd had such tests. I'm thinking he didn't read the notes, but rather went by the interview done by the med student alone.]
"You have pain in your eye socket and the straying eye. Have you ever been to an eye doctor about it?"
"Not recently."
"So, why are you here?!"
"Because the first neurologist thought it was possible m.s., and I want to figure out what has been causing these symptoms all these years."
"Why now?"
"Because I'm sick of not knowing, and 2012 kind of scared me. I want to get this figured out before it gets even worse."
"So, when you had the problem when you were a teen and your leg went numb, did you go to the doctor?"
"No."
"Why not?"
"I didn't want my dad to worry, and it went away anyway." [In my head, I'm thinking, "Because I've never been the type to like going to doctors, and you're confirming that feeling, dude."]
"Well, I can tell you that I don't think it is m.s. nor even neurological." [In my head, I'm going through my own medical history, my own research, and trying to reconcile his statement with what I know. I'm so baffled that I'm not hearing a portion of what he's saying now, but start tuning in again when he starts talking about the possibility of it being psychosomatic.]
I laugh right then and smile, saying, "I've thought of that over the years, too, believe me."
His eyes got less cold and he said, "Well, I'm no psychiatrist, but I don't see you exhibiting the signs of it being a psychiatric issue. Though, they have a whole battery of tests to determine this sort of thing, too."
There are many more parts of the conversation I could share, but that's enough to probably explain to you why I'm so baffled as well as so down. I'm trying to be kind and fair in my thoughts of the fellow, but he really didn't impress me. I liked the medical student, though.
When they were both in the room toward the end, I really felt like pointing at the med student and saying, "You can stay." Then, pointing at the specialist, smirking, and saying, "You can go." (chuckle)
But, I was my polite, quiet self, walking out of there and waiting 15 minutes before crying some silent, hot tears of frustration, bafflement, and discouragement.
***
Blog Entry of Explanation: During one of our conversations afterward, my logical hubby mentioned that the specialist had reminded him of Dr. House (tv show character) in his bluntness and said, "And, you like Dr. House."
True. Hubby reminded me that doctors like that cannot get too personal with patients they see so seldom nor can they form attachments. I agreed. The problem is, though, that I wasn't expecting something personal or an attachment from the specialist. I didn't figure I'd see him often, if again, and I figured he'd think the same way. His office is quite a long drive away. Plus, I'm not the type who wants to be coddled nor befriended by a doctor. I've met many doctors in my life. I want business. I want logic. I want truth. I want a fellow investigator.
This was something else.
***
Another letter excerpt:
Talking afterward, my hubby made me realize that when I'm at a doctor, I tend to 'sugar-coat' it. I forget about how much something hurt or how frustrating a symptom was when I was having it because..."well, I'm better now. I can't complain."
And, once there was distance between me and the appointment and I could ponder, I realized that I tried to do well on the tests there in the office.
"How do you do well at the in-office neurological exams," you might ask. I realize now the things I'd done to successfully compensate for the problems. I have lived with these symptoms for 20+ years, so I suppose there are some techniques I've mastered to compensate for my weaknesses. I do it so automatically that I didn't think about NOT doing them at the doctor's office. I just didn't think to NOT compensate.
For example, when it was just the medical student, me, and hubby in the examination room, those were the "truer" results. [95% of the visit was with the med student only; 5% with the specialist, near the end of the appointment; hubby was there the whole time].
The med student took me through several tests. One was he asked me to put my feet as close together as I possibly could, and he watched my feet. I put big toe to big toe, ankle to ankle, then looked up at him. He looked at me then told me to stare at the wall straight ahead. Easy enough. Then, he said, "Now, close your eyes." It didn't take very long before I felt a bit like I was pitching a little to my right, so I put my hand out that direction just a little way in case I'd need to catch myself if I went that direction. He then said I could open my eyes.
On another one, he asked me to just walk back and forth from corner to corner, heel-to-toe. I was looking down to make sure I was walking heel-to-toe and my arms were pinwheeling because I was trying to tight-rope walk, you know. (chuckle) Then, he asked me to walk on tiptoes, then walk on my heels only. The tiptoe walk was much simpler than the heel walk, but I didn't think much about what all this actually looked like until the student left the room, and it was just hubby and I in the room.
Hubby said I'd pitched over so drastically when I'd had my eyes closed that the med student had quickly brought his arm out to catch me if I should fall. That surprised me because I didn't think I'd pitched to the right THAT far. Apparently, I had.
Then, hubby said I looked drunk when walking the heel-to-toe as well as really bad when walking on my heels. I didn't think I'd done that poorly. Hmmmm....
So, anyway, later, when the specialist was in the room, the specialist did a few of the same tests. As I thought back through those second tests -- the ones given by the specialist when he eventually came in -- I realized what I'd done.
The specialist asked me to look at the wall and close my eyes. Ahhh...I knew this test already. This time, I set my feet closer to shoulder-width apart rather than right next to each other. [He didn't notice.] And, when I closed my eyes, I tried leaning to the left so that I wouldn't fall to the right again. Oy!
Then, when the specialist asked me to walk from one corner of the room to the other corner of the room, heel-to-toe, just as the med student had asked me to do, I started out with my arms up for balance. The specialist said, "It is easier if you look ahead at the corner." Since I know that, with yoga, it IS easier to balance when you have your eyes ahead on a fixed location, I knew that would help. So, as he suggested, I focused on the corner rather than looking down at my feet. It was easier to balance. Yay!
Right then, though, he reiterated, slowly, "HEEL...TO...TOE."
"I thought I was," I said.
So, I compensated. I blended my corner stare with listening for my heel to hit something solid, which I was assuming would be the toe of my other foot. I figured if I felt a jolt up my leg, my foot had stopped on something solid and that would be a good indication I could pick up the other foot and throw its heel toward the opposite toe, hoping I'd come close.
But, apparently, I was getting it wrong somehow.
"No, LIKE THIS," said the specialist behind me.
I turned around and saw that he was doing a heel-to-toe thing with his feet while he was sitting there so that I'd know what "heel to toe" meant.
(sigh) In my mind, I'm saying, "I'm trying to get this right. I do know what it means."
So, I started again, concentrating even harder, trying to feel in my "heel foot" when I'd hit something solid and to feel in my "toe foot" when the "heel foot" had banged it. Thinking back through, I don't ever remember feeling anything on the "toe foot" and figure now that I had decided the two had probably met when the "heel foot" probably hit the floor just short of the toe rather than actually hitting the "toe foot."
Pretty soon, I think he must have given up because he said, "Never mind," and went on to another test.
Later during the specialist's exam but right at the end of it, hubby was talking to the two of them and I was listening to him. I realize now that by this time, I was starting to really tune out the specialist and anything he was even doing to me. He had positioned himself in front of me. We were both sitting. His back was to hubby, and I was facing hubby. The specialist had grabbed my thumbs in one of his hands and picked up the reflex hammer with his other hand. I was so busy concentrating on what hubby was saying that I had looked up again to focus on hubby's face rather than my hands in the specialist's hands.
Afterward, when I'd gone through the exam in my mind, I realized I haven't a clue what the specialist did with the reflex hammer or with my arms/hands. I didn't feel a thing. I don't recall even feeling his holding my thumbs, and I'm not sure I'd have known it if I hadn't looked down to see that's what he was doing. I have absolutely no clue whatsoever whether he hit me with the hammer anywhere or not. I didn't feel a thing. And, the specialist didn't say anything about the test he's just performed either. Weird! [I wonder now if the specialist felt like I wasn't giving him or the exam enough of my attention.]
Like a little kid, I just let him do whatever it was he was going to do because all I was really thinking about at this point was listening to hubby while I waited to get the h-e-double-toothpicks out of there. (chuckle) I'd already disconnected with my body, just like I used to do when I was a kid and not feeling well. I wasn't even observing from afar like I'd do sometimes as a kid. I'd just stopped observing what was being done with my body.
Indeed, I had been just trying to pass the tests. I was automatically compensating for my weaknesses without realizing that could keep the specialist from observing what the med student had seen. And, to be fair to the med student and to the specialist, the med student's future often relies upon keeping the doctor they are serving for happy. What the specialist says, goes.
And, the specialist saw a patient passing the tests, and he did not realize I was automatically compensating for my known weaknesses as well as quickly adapting to do better at the second try on tests. The specialist got the revised/better version. The med student got the raw, relatively-uncompensated version. And, the med student did the majority of all of the tests by himself. The specialist did only a few when he came in and the only one new to me by then was the arm-hammer-thumb thing I didn't pay any attention to.
So, I was adapting without really thinking about what I was doing or what the consequences would be....and, later, I was just thinking about something else until I got to go home because I didn't like being at the doctor's office then any more than I did when I was a kid. And, I didn't make a big deal out of the symptom list I'd created for their perusal. "Yup, this is what I've experienced over the years, but not all right now, so I'm better. Can I go home now?" [head shake]
This afternoon, I sat there with my Kindle on the Bible app and wondered what to read. Isaiah came to mind. I punched on "Isaiah" and a chapter list popped up. What number? Oh...49, I guess. I have a really hard time remembering what is where based only on the name of the book and chapter numbers. My brain just isn't wired like that. But, as I began to read, I realized that this was one of those chapters that comforted me so much when I was a kid. I'd be feeling so hated and wondering what it was I kept doing wrong. Then I'd read Isaiah 49:15-16. I'd picture my name and face printed on His palm and my holding His hand, palm-up, to see it there. Somehow, that would always make me feel so much better....so cherished. This time, though, I kept reading on into verse 17: "Your builders hurry; those who destroy and devastate you will leave you."
I've felt so demolished...so torn down...so discouraged ever since the appointment. But, as I turned to the Lord, look how quickly He built me back up! Wow, Father, You have picked me up again, just like You always did when I was little. You comforted me in Your arms, and I feel better. You hurried to me and built me back up in a hurry. Thank You!
And, when I came back to my computer to write this to you and thank you for praying, I felt impressed to watch, "Remind Me Who I Am" by Jason Gray again. Remember how all those signs are saying what each person feels like at the time, but next thing you know...all those signs say, "Beloved" instead? God made my sign say, "Beloved" a long time ago. All I need to do is run to Him and have Him show me that "Beloved" sign again. However many times it takes for me to be shown that sign, He'll show it to me. What a wonderful God we serve! http://youtu.be/QSIVjjY8Ou8
***
So, what now? I just keep on keeping on. Even if I never find out what this is....even if it is MS and I find out too late for meds to really help me.... Well, it isn't too bad, and it likely won't become intolerable. I am content. I'll still read about MS and report about what I find. I've decided that whether I have it or not is irrelevant when it comes to that. There are others with it and with other nasty ailments. For them, I'm still "on duty."
