Nov 26, 2012
MedHelp won't let me post my update for you all in the forum because it's too long. Grr. So I've posted everything here instead. I'm so sorry; this is causing so much confusion, I'm sure.
Hi, all! I posted in this forum several months ago but haven't really been around since. I tend to quit posting in medical forums after a while because it begins to feel like I'm just annoying people after a while. However, selmaS posted on my new journal entry and asked that I update you all on what has been going on with me, so here you go for anybody who may be interested :)
I'm going to try and keep this as short as possible, but for those of you who may not be familiar with my story, I'm 23 years old and have been experiencing a wide array of neurological issues every since I was 14 years old. They didn't all start at once but, rather, have appeared over the years. Just as it seems as though I couldn't possibly develop more issues, a new symptom pops up. Super frustrating! I also avoided doctors for several years because I was stupid and afraid of finding out I had to have brain surgery or something. Somehow, I thought that living with all of these problems was preferable to having my skull sawed open, plus I was clinging onto hope that the problems would just go away themselves if I just ignored them them long enough. Dumb, I know. Someone mentioned chiari to me as a possibility once, so I posted on this forum asking if you all thought my symptoms sounded reminiscent of it. I don't know if I have chiari, though; it's just one of about a gazillion possibilities.
So, back in I think April, I reached an all-time low and decided to go to my GP. I presented her with a long list of my symptoms, and she told me they were all due to anxiety and prescribed me Xanax. I tried to explain that I was pretty dang sure that anxiety was not my only issue, but she wouldn't listen to me. A few weeks later, I had a really scary episode and called my dad in tears saying I didn't know what to do because I knew there was something really wrong with me, but my doctor wouldn't listen to me. He called his internist and asked him if he would see me, and we scheduled an appointment for three weeks later. His internist ordered an MRI and gave me a referral to a neurologist, but he said he didn't want to keep seeing me as a patient because he's in the same medical group as my GP and it would "create bad blood" to take one of her patients.
I put off scheduling the MRI for a very long time because I was still petrified of finding out I had a tumor or something and needed to have brain surgery. I finally went to the imaging center to have it done one day, but I freaked out when they opened the door and I saw the machine, and I told them I couldn't do it and wanted to go home. Stupid, I know. The whole situation was a mess complete with my dad telling me that he was kicking me out of the house, and if someone abducted me and murdered me, there would be no funeral because nobody in this world gives a sh** about me. So yeah. Then several weeks later, I went to see the neurologist. He wanted to order an MRI again. I told him about what happened the last time I went to get one, and he said we can try a CT scan since they're over quicker. I got that done, and he said it looked normal except there was some cerebral atrophy. He just shrugged it off as insignificant, though. Then he said, "Well, I don't want to put you on any medications at your age, so let's just wait 5 months, and then we'll see how you feel." I told him I've been having issues for almost a decade, so I didn't see the point in sitting around for 5 months waiting for a miracle cure, and he just said, "I understand that, but I don't want to put you on a bunch of medications."
I left the office very frustrated and emailed a local acupuncturist asking if he thought his services could help me since apparently my neurologist just wanted me to sit around and continue to suffer for 5 months anyway. He seemed confident he could help, so I gave him a try. I went to his acupuncture sessions and took the Chinese herbal medicine he gave me for about 3 months, but I didn't feel like I was seeing any benefit and stopped going to see him. He said I didn't really give Chinese medicine a fair shot and can't expect to be cured of a 9-year problem in 3 months, but his services are expensive, and I can't afford to continue to toss money at something I don't feel is helping me at all. One thing he did mention to me, however, is that a lot of my symptomology is consistent with chronic Lyme disease, so I began looking into that as an option after reading several people's stories and realizing that they DO sound a lot like me.
I went to a cardiologist about the chest pain I was having somewhere in there as well. He did an ultrasound of my heart and a stress test and said they both looked fine and he "didn't feel he had to run any further tests given my age," so I think I'm done with him too.
I asked my GP for a referral to another neurologist and just began seeing him a few weeks ago. He's going to do an MRI (this time I have to force myself to do it) and said he's going to do some other testing if that comes back normal because it could be a "structural problem." He's super booked and doesn't have a lot of availability, though, so I can't see him again until January. I asked him if he would test me for Lyme disease while I was there, but he said no because only people in New Hampshire get Lyme (completely not true by the way. ugh). About a month earlier, I had called the Georgia Lyme Association and asked them if there were any Lyme specialists in my area I could go see, and they said there weren't, but there was a doctor with a walk-in clinic who had been willing to authorize Lyme testing for patients in the past. The problem was he didn't take insurance, and he also has TERRIBLE online reviews. I figured I just needed him to sign the paper, though, so I went to go see him. He was SUCH a jerk to me; I never want to see his face again. He did run the test, however, so now I'm waiting on those results. I'm waiting to hear from the imaging center to schedule my MRI for the neurologist, too. It's been weeks, and I haven't heard anything, argh.
So yeah, I'm still here. Still frustrated with no answers. The good news is I'm surviving, though, I suppose. :)