Brainz and stuff 06/02/2009
 
Picture
So it's been forever since I did an update on anything from my little corner of the MS world. I finally have something worthy of writing about however, since yesterday I went in to have some neuropsychological testing done. I was oddly exited about going in for the tests, I guess partially because the brain is just so darn fascinating. Since learning that my brain may look a little more like swiss than cheddar, I definitely want to learn more about how it processes. 

My boyfriend went to the appointment with me, since I wasn't sure I'd want to drive home from Portland afterwards, considering my taxed brain may not enjoy the highways and byways. Also, he hasn't been to a Dr. appointment with me since I was seeing my first neurologist, and I think he secretly enjoys being a part of this process. I know I like having him there, simply because it helps make me feel a little more understood by him.  

So the first half hour of the appointment consisted of just conversation about changes that I have noticed not only in the last few years, but since my diagnosis. I went over with her the issues of short term memory, my inability to focus at times, as well as just feeling overall foggy. She asked a lot of questions about work and we talked a bit about my plans for getting back to school this fall. She was a bit concerned at my plan to do full time classes, as well as keep working (albeit very few hours) and suggested maybe doing part time classes. I'm definitely taking this suggestion into consideration, but stretching out my education any longer than I need to, isn't exactly thrilling. I am the queen of the impatience. She also offered a few suggestions for ways to make work a bit more bearable when I'm finding myself overwhelmed. We also talked a lot about stress, which isn't something any of us can just make disappear, but she wants me to work on ways to better deal. She has referred me to a certain psychologist who will help teach me some skills in this department, and I'm not opposed to that at all. It was interesting to hear my boyfriend pipe up and answer some questions regarding changes that he's noticed in me as well. I have to admit, it was definitely interesting to hear things from his perspective. He pointed out my increase in "word fishing" which is sort of hilarious, as well issues with my memory. He talked about how he'll tell me something, and I will swear up and down that he never told me. Dr. Sherman made a good point, that part of this is just selective hearing, which happens a lot in relationships, but the fact that it's happening so much may be part of my cognitive issues. One thing that was slightly disturbing was to hear was that he's noticed me begin to struggle with writing, which is something that came a lot easier for me in the past. He mentioned the blog, and how it could sometimes take me days to finish writing a short little post, but how in the past I could write a research paper in a day. I was a little embarrassed by this verbal, third party acknowledgement of my less than exemplary writing skills. I feel like it's a good metaphor for how I'm just sluggish at times, with everything. I feel like my processing time for just about everything, as well as my production time, has gone way down.   

 
 

After months of waiting (I'm sure none of you know what that's like) I finally got to get in and see my MS specialist, Dr. Stanley Cohan. Just my luck I came down with a nasty cold a few days ago, which has left me feeling pretty shitty. I wasn't about to cancel however, and wait another four months to get in! So quick warning for you all, this is going to be a long schpeel about my appointment, if you hadn't already guessed. I did come at him with questions a plenty, so you might actually find some of this semi-interesting. If not, well then I'm sorry, and I can't say I blame you. It's not the most interesting thing in the world to hear someone ramble on about a doctor appointment. Oh, what has my life come to!! Anyway, read on if you wish...  

 So we began with going over my medical history, and it was way more thorough than anything my previous neurologist had covered. He asked me to go over all of my symptoms, and explained to me the difference between the symptoms I am experiencing now (which are definitely residual) and my actual attack. I feel a lot more clear on that now, although not terribly positive that I have so much leftover gunk hanging around. That said, we did the regular neuro exam, which of course I aced... always do.

Going over my he showed me a few lesions which I have on my cervical spine, and one in particular that is probably causing the bulk of my physical symptoms. We then moved onto the brain, and he explained that my lesions are pretty well scattered, rather than contained to one or two specific areas. He didn't say this was totally abnormal, but he did point out that they are sort of all over the place, if you will. He pointed out that the areas where the brain lesions are located, are generally consistent with cognitive problems, as well as depression. Well check, and check. The cognitive issues are definitely there, and it was pretty great having him confirm what I've been feeling, with a little doctorly know how. The depression, I will admit, is also there, but I do not think it's debilitating in any way, and I'm pretty good at recognizing it. It isn't something that totally knocks me out for weeks at a time, it's more of a crappy few days, and generally during a certain time of the month. Not totally abnormal in my opinion. I feel like at this time, treating this particular symptom would actually do more harm than good, and I told him so. He accepted that and just wants me to make sure I'm keeping myself in check when it comes to the issue, and remember that if I feel like I need to get medicated, I will. Done and done.

In regards to the cognitive issues, he did mention that he doesn't feel like my line of work (slinging coffee) was probably not the best thing for me to be doing because of the multi-tasking and sort of high stress than can sometimes ensue. The issue with work is one that I have been realizing for myself especially over the last few months, with the changes that have happened both cognitively and physically. This issue consumes more than a paragraph in my mind, but I'm not going to delve into that in the here and now. While I appreciate his honesty, there isn't a ton I can do about the work issue at this time. He was pleased with the fact that I would be back in school this fall, and even offered that if I need someone to do note-taking or something like that, he could call the school and make that happen. Granted I am pretty much set on taking online classes, but if I do end up on campus, I don't think that would be a bad deal. This is a small example of how awesome I think he is, in that he's willing to look at the different aspects of my life where perhaps I could use a backup, and making it happen. Very cool. 

Now it was time for the sit down and for him to give me the schpeel on why he is pleased I went with Avonex, and he gave me a rundown of the statistics. Of course I have heard them all, but I was playing my part as a good patient, and letting him do a little of his doctor thing. Although I still am not totally sold on what Avonex will be doing for me, I have decided to try and be a little more positive on it, as much as one can be in such circumstances anyway. If I'm gonna do it, I might as well not bitch about it. So one of my numerous questions was in regards to my freakishly red/purple hands, and *gasp* blue toes. I am actually super self conscious about this lately. Before I could even asked, he sort of stopped and asked me, "how long have your hands been red like that?" Well they've been getting worse over the last few years, is the answer. He said it was definitely MS related, and was something to do with nerve disease/nerve supply to blood vessel. He assured me that I wasn't going to have my toes amputated or anything, that's a major plus. It's pretty normal stuff I think, although the toes, again, are an abnormal shade of blue. I'm curious to see how I look in flip-flops this year, as it's already worse that last year.

I talked to him again about the findings from my LP, which showed multiple "O" bands, definitely more than two. Although again he didn't relay how many. He did however say that the number of "O" bands didn't really make a difference, and in fact my MRI was so consistent with MS that the LP would not have been necessary for a dx, he however was not the one who ordered the LP. I have to say that this made me slightly irritated, knowing how much of a pain in the ass fiasco the whole week of the LP became, with a subsequent failed blood patch and week long spinal headache. It is safe to say that I don't think I'll ever have another LP unless it's for a way better reason. Overall though, I suppose I would have forever been asking myself if the LP would have also been consistent with MS, had I never had it done.

We also went over the drug Provigil, which again, he brought up before I could even ask. He feels like it's a really good drug for fatigue (and I'm hoping it clears the mind a bit as well) in his patients, and he gave me about a month of free samples. I'm going to start it as soon as I'm over this virus/cold crap, and I'm a little nervous, but I'm excited to try it. I am so tired of being tired, and I am ready to get a little of my old spunk back for shiz. I'm crossing my fingers that it doesn't give me any of the anxiety which could potentially be a side effect. I so want this to work for me. We also talked about supplements, and Dr. Cohan concurred with my regular neuro that Gingko Biloba be taken out of the equation completely. I asked him why and he said that basically it produces "unpredictable effects on the immune system" which isn't really a good thing considering the effects of the immune system on MS. I asked him what supplements he suggested, and he said to really lay off of most of them, and mainly stick with Vitamin D, making sure that I get at least 1000 units a day. I asked why Vitamin D was so important for MS, and his answer was consistent with what I had heard before, simply that in our region we don't get enough of it, as well as the fact that it may play a role in protecting one from getting MS. He also was having my vitamin D levels tested from my blood draw that day, so I'm interested in hearing the results.

Another question that I had was related to the Epstein Barr Virus or Mono, which I possibly had about six years ago, and Jackie has definitely had. Jackie is interested in researching the issue, and it is something that I have also been curious to know more about, since research has suggested it may be a link to MS. He didn't really seem too worried about the issue, and it wasn't something he waned to elaborate too much on. Either way I still want to know more about the possible connection with MS.

So one of the most important questions I had for him was in regards to neuropsychological testing, which was something that I didn't think would be terribly easy to have done. This is another one of those issues that he actually brought up before I could, and I was so excited when he suggested this was something he'd like me to do. So this could help in not only addressing the actual cognitive issues and aiding me in future needs and insurance claims if you will, such as I'm guessing different types of therapy I might want to take advantage of. I'm super excited to get in and get this testing done, hopefully sooner than later. I should find out soon when we can schedule it, as it has to of course, be approved through insurance first.

So there were three things I wanted accomplished with this appointment: I wanted to be able to go over my MRI with the doctor; I wanted my laundry list of questions answered with some clarity; and I wanted to actually be given the time to be really heard. Luckily all of the above was accomplished, and as a bonus, I didn't cover anyone in the office with snot. The appointment went even better than I had expected. It's sort of the major highlight of your month is a certain doctor appointment, but alas, this is my part of my new life with MS. A good doctor makes me pretty effing happy!!

 **update** Jackie asked in the comments sections what kind of neuropsychological testing I'll be having done, and I have to say that at this time, I'm not really sure. I should know more soon, and will definitely be updating on this...**