Last week I saw my family doctor one day and my neurologist the next.
Important note regarding my family doc: MY GUY IS BACK IN FAMILY MEDICINE! After several months trying out a new specialty, he decided that it wasn't for him, and returned to where he belongs- as my doctor! Ironically, less than 2 weeks prior to finding out this amazingly awesome news, I finally caved and went to establish becoming a patient at a new practice. Thankfully, I can forget all of that nonsense and stick with the doctor that I've been with for about 20 years. He didn't return to his original practice, so I had to go through the process of an appointment establishing my care at his new place, so that is pretty much all that happened there. More than discovering my "average" cognitive function happened at my neurologist appointment, so I figured I should update on that here, as well. As I posted previously, the new medication I've been waiting for (Ocrevus) was finally approved by the FDA. So now what I had to do is get a referral to a different neurologist, one that was actually involved in the trials of the drug, with the assumption that his office will be one of the first to get the med and to have appropriately trained staff to administer the drug. Our local hospital took almost 11 months to order the last newly approved disease modifying therapy and to get their infusion clinic staff trained, and ain't nobody got time for that! I've already been almost 5 months without therapy. I'll switch to this other neuro until my local neuro can prescribe what I need. This guy is located just over 3 hours away from where I live. His office recieved the referral and were amazingly quick to call and schedule my appointment. Unfortunately, the actual appointment itself will not be happening as quickly. Their first available appointment for a new patient is not until July 21, which brings me to 8 months without treatment. Not only that, but there is a very decent chance that I won't actually get my infusion at this July appointment...it might just be an appointment to establish myself as a patient, at which he will decide if he believes I am a good candidate for Ocrevus. Also at this appointment, we discussed these horrible, debilitating, headaches that I've been suffering from for almost 2 years. They start at the base of my skull and spread up the back of my head, making me feel like the back of my head is about to explode. My neurologist originally chalked the pain up to Lhermitte's Signal, and sent me for steroids about a year and a half ago. I discussed the headaches with my family guy and he opined that it was actually occipital neuralgia, which I reported to my neuro, and she agreed that is likely the issue. Occipital Neuralgia is basically caused by an injury or irritation of the occipital nerves (in my case, the nerves are compressed, caused by the muscle spasms that MS causes me to have in my shoulders/neck). It causes a distinct type of head pain- a piercing, throbbing, electric-shock-like headache that begins in the upper neck, and spreads up behind the ears and across the scalp. It even causes my scalp to be tender to the touch, which I discovered during a particularly upsetting hair washing episode a couple of weeks ago. This diagnosis also explains some disturbing symptoms I've been having with my vision. I'm thankful for an explanation for the blurry vision, because I was afraid it was MS related and could become permanent. I'm already on any drug that would be prescribed to treat this problem, so my options are physical therapy or to get a nerve block. I opted for the block, which of course my neurologist does not perform, so I got another referral and another appointment that is months away. Boo! LC
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I don't mean to sound like an asshole, but I realize that there is an excellent chance that I might. The thing is, there are many average things about me, about my life, and I'm cool with that, comfortable with average. There's nothing wrong with average.
I had cognitive testing done about a month ago, and reviewed the results with my neurologist at my appointment yesterday. My neuro was very pleased, because for the most part, my testing showed that my cognitive abilities are "average", without any significant changes since the cognitive testing done in 2014. Again, average is okay. My physical appearance is average. Therefore if someone were to tell me that this was the case, it wouldn't bother me. My home is average, our income is average, hell, my whole life probably falls squarely in the middle, and I am happy there. But...my cognitive abilities...my ability to reason, ability to think logically, to plan and execute that plan, to be organized, to multi-task, to learn and to remember what I've learned...has NEVER been AVERAGE. I'm not saying I was a genius, by any means, but definitely of above average status. Of course, there is not any testing in my medical records to reflect this, because who has cognitive testing without reason? With no baseline testing of the pre-MS functioning capabilities of my brain...this is what I'm left with. What I'm supposed to be "relieved" and "happy" to know. Average cognitive functioning abilities. Awesome. LC |