Tag: test results


A Pain In The Head

20
January

On Wednesday, I went back to the neurologist, after the office called me Tuesday afternoon and told me to show up at 3:45 the next afternoon. I got there at about 3, since my dad had a physical therapy appointment an hour earlier at the building right across the street. Being there forty-five minutes early wouldn’t have been a problem if I had been called back to a room sometime before 4:15. Of course, since it was a doctor’s office, it wasn’t humanly possible to be seen on-time. No, I didn’t go back until about 4:45 or, maybe even, 5:00.

After going to the exam room, I waited…and waited…and waited. Finally, the doctor came in. First, he apologized for having been too sick to see me before then. (I didn’t know he’d been sick.) Then, he went over the results.

He said that the MRI had revealed 5 white spots (aka: white matter lesions) on my brain. He said the radiologist report said there were 10, but that he’d only seen 5 legitimate ones. (The other five were apparently blood vessels and other anatomical parts.) He said that these were normal, especially for people with migraines. He told me, after that, that my EEG had some abnormal electrical activity, which seemed to be related to migraines. I asked him about my myoclonic jerks being worse lately–again, I was told it was the migraines. The dystonia is apparently due to the migraines as well. So, he basically told me that migraines are all powerful, evil problems that cause a hell of a lot of pain and torment for people.

While he was telling me about the results, he told me that he would’ve had the MRI results sooner except that, according to him, his computer just suddenly started writing other files over the disc the hospital sent him. This resulted in him having to get another disc. I’m not exactly convinced, but…who knows?

Anyway, I am now scheduled for a “BOTOX evaluation” because he said that he didn’t think that just treating me with pain medicine was going to cut it anymore. Apparently, I need something more permanent or long-lasting. (From what I’ve read, there is no conclusive data about the level of permanency of BOTOX injections when used to control neurological conditions.) I don’t know if my insurance will cover BOTOX. (I’m now on a Medicare Part C program.) So, I don’t know if I’ll be able to have it done or not. If I do have it done, then I can tell people I’ve had a nose job and BOTOX. Fun, fun, fun.

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Unintended Anxiety

7
January

My head hurts. Actually, the back of my neck and the very top part of my back is the part of my body that really hurts. I was hoping that by now I might have a full-fledged answer for why I was hurting. I was hoping that maybe the test results would be in, and the neurologist would know for sure what the hell is going on with my head, neck, and back.

I had the appointment last week to find out the results, which turned out to be a dud because the doctor had the hospital emergency that he had to deal with. He was supposed to call that evening. He didn’t. I gave him the benefit of the doubt and didn’t call the rest of last week. I even waited until halfway through this week, just in case he was out or backed up because of the holidays. But a couple of days ago, I got tired of waiting and made the call.

I got a call back this afternoon. It was his nurse. Apparently, he was looking at my chart, but hadn’t gotten my EEG results back until late this week. I thought that was strange because of the appointment from last week being scheduled and me being told that my results were in that day. The nurse today couldn’t tell me what the results were, even though they finally had them. I wasn’t really worried about the results until I talked to my mom.

My mom was able to trigger my inner health-related panic attack voice. She said that if the nurse couldn’t tell me the results, then she must not have been able to read the EEG. She then said that that would be due to the EEG being abnormal in some way, so I started getting nervous. I don’t think she meant to trigger that anxiety, but I have this tendency to think the worst when she makes that kind of suggestion (because she is generally right about it) and I was sitting at home by myself in a bit of a panic. (My parents left for the grocery store right after I got the call.)

When they got back, I mentioned how nervous I was. At this time, my mom said it was probably no big deal and that she didn’t mean to scare me. I don’t know that my mom understands just how much this kind of thing worries me. I’ve talked about it in therapy multiple times before, and my therapist has told me to tell my mom not to make the comments because of the heightened anxiety it causes, but I don’t feel that it is fair to make my mom stop saying random things because I have an inability to deal with the comments rationally. It isn’t like my mom is trying to upset me or hurt me or anything. If anything, I think she may be trying to prepare me.

So, now I am going to try to forget about the whole panic-related stuff and have a relatively relaxed weekend. I bet that won’t happen, though. The neurologist is supposed to definitely call by Tuesday, so I hope that that does happen. I’m not holding my breath on it, though.

Oh, and, in a somewhat related note, my mom made a list on the first of all of the things that the neurologist (or, in one case, a different neurologist that used to treat my headaches) has diagnosed me with. I was kind of surprised at the length of the list. After she made the list, which is below, she told me why she made it. Apparently, the next time that my aunt starts in on how horrible of a person she thinks I am, my mom wants some sort of proof that my life is a bit more difficult than my aunt seems to realize. I mean, my mom and Nana have both tried to convey the physical and mental stuff I deal with, along with the stuff I have to do and (sometimes) choose to do, even though I have very little energy and always feel like crap or hurt. I think it’s basically her version of a wake up call.

The List

  • Migraines (actually, 3 neurologists dx’d this)
  • Chronic Daily Headache (2 neurologists dx’d this, including 2 of the three that dx’d the migraines)
  • Dystonia
  • Essential Tremors
  • Myoclonus
  • Vertigo
  • Tarsal Tunnel Syndrome
  • Degenerative Arthritis of the Lower Spine
  • Absent reflexes in parts of my legs

I think that is everything, but I might have forgotten something. Anyway, my mom seemed shocked at the length of the list, even though I’d told her about each of the things when the doctors would tell me what I was “suffering” from. And some of the things, i.e. the tremors and the myoclonus, are things that I was told I had quite a while ago. I think the tremors were diagnosed in middle school; while the myoclonus was diagnosed a couple of years ago, even though it had been going on since I was a very, very small child.

So, now I wait to find out if that list is going to be edited…

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I’ve Been Tortured Enough

21
June

I had one of the studies done today. They decided not to do the one with the needles since they figured out what was going on from the first one. The neurologist said that I don’t have neuropathy. He said that he thought that my feet and hands had been swelling, due to fluid retention, and that since they weren’t doing that much anymore, that might be why the test didn’t show anything. (I did get diagnosed with Tarsal Tunnel Syndrome.) He told me to cut down on my salt intake, which is next to nil normally.

I brought up the dizziness, and I explained all that had gone on there. He said that I might be having that because the fluid is now in my ears instead of my feet/hands. He’s going to do a vertigo test next month to check on that. He said it is either that or Méni`re’s disease. The former, he said, was possibly connected to hormones and diet, and the latter, he didn’t go into very much, but I know a little about and it’s not a romp in the park.

He said my lab work from the mega-test last week hadn’t come in yet. He said the hospital was taking up to 2 weeks these days to get results back. That’s not good, since I’ve been a bit worried by it.

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Sleeping Sickness

1
July

Well, I don’t think my sleep study later this month (happy July, btw) is going to be very accurate. Now that I’m on the Lyrica, I sleep at least 14 hours a day. I’ll go to bed for seven or eight hours, then wake up and stay awake for a few hours, then go back to bed for six hours, and then wake up for a few more hours. It’s absolutely crazy making. (Like I need anything else to drive me crazy.)

Well, according to the results from the lovely MRI, I do not have anything wrong with my cervical spine. Actually, the exact words were “within normal limits”. I’m sure the nurse considered this to be comforting news when she wrote it on the card and sent it through the mail, but when dealing with potential spinal cord injury, it is not comforting to read “within normal limits”. You would rather know that things are just NORMAL. Not within the limits of being normal. What does within normal limits even tell me? What if it’s on the bad end of normal? I mean, what if there is something that’s almost a problem but it just needs to be a fraction worse? I don’t want to sound like I’m freaking out, but in a way, I kind of am. This is kind of an important body part to me. I like being able to feel things south of my head…even if I do mostly feel pain from those areas.

I must announce a sad, sad death in the family. My printer, a beloved HP Deskjet 880C, which was given to me by my cousin Eric when he upgraded to a new printer about 6 or 7 years ago has gone to the great printing room in the sky. I noticed yesterday when I was trying to print something that it wouldn’t print, so I actually looked at it and saw the light wasn’t on. After testing various cords, I find that the printer, which has survived so many horrifyingly long papers (an almost 20 page one for Social Work once) and printouts, has passed on. Let’s all take a moment of silence to remember this great machine.

Columbia House has supposedly canceled my two accounts with them. Of course, I’m still getting mail from one of the clubs. :/ This is not good. They caused me to overdraft one account by $85 ($44 of that was for the product and $41 was the fee) because I logged in to say no to a Director’s Selection 1 day too late. I apparently logged in too late by 2 days on the other account and overdrew by $50. I wrote them a curt email explaining this and they said I could return the DVDs (how nice), but I would not be getting my overdraft fees back. Personally, I think that’s wrong. They shouldn’t just send you things that you don’t order. Maybe instead of automatically sending Director’s Selections, they should automatically understand that you might have a life and don’t want the damn DVDs. Of course, that would require a brain, and I seriously doubt that whoever thought of the whole Director’s Selection BS at CH has a brain.

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