(no subject)
In other news, I'm worried that I have MS. Or something like it.
For a very long time now I've had all these crazy things wrong with me. Some are chronic, some come and go. Some can maybe be explained, many can't. But if you look at the list of symptoms for MS, they're pretty much all there.
Trouble is, my neurologist doesn't seem to take me very seriously anymore. We did a few tests when I first started seeing him for my daily headahces six (?) years ago, we tried all these different meds, but now it's pretty much a stack of prescriptions and facetime every three months. I've mentioned the things that concern me, but he's mostly dismissive. Sent me for a sleep test for the aphasia (forgetting common words, like "spatula", or mixing the syllables of words, like "bood goy" instead of "good boy") on the grounds that maybe I'm not getting enough sleep - but since he's the head of the sleep clinic is it really any surprise? But it's more like "Doctor, there are times when my vision gets blurry and I can't see, or it seems like the lights are dimming around me when they aren't" - well, I'm getting up there in age, he says. Or, "Doctor, when I hold my hand in this position my arm shakes and I can't hold my fork". - well, don't hold your hand in that position. I think he thinks I'm a slightly hysterical nearly-middle-aged woman who needs to lose weight and stop looking up symptoms on the internet. And maybe he's right! But on the other hand: aphasia. vision problems. hearing problems. numb hands and feet. tingling and itching for no reason. incontinence, weakness, headaches. balance issues. I'm mean, look it up.
I had EMT (EMG?) tests done in 2010 and 2012 (because I was dropping things back then, too). They showed mild neuropahty and left open a lot of questions that weren't really pursued. I want to be tested again, and I want someone to take me seriously and say, No, it really doesn't look like you have MS or anything else... or, maybe you do. Because if I DO, I want to know now, so they can treat it early. I have little kids for fuck's sake. Sometimes I wish something irrefutable would happen, like I suddenly wouldn't be able to move my arm or something, so they'd take notice. But something like that would mean the disease was further along, and it's not like I want that. Or maybe I don't have it all, so I'm sitting here wishing it on myself? But then my foot goes numb for a few days again, or I try to speak and can't get words out, and I get worried all over again. I'm not making this shit up.
I've been asking, but he's been glossing over it. And I've let him, because what do I know. But in the back of my mind, there's the knowledge that, in many cases, we know more than our doctors do. There's the memory of the (woman) doctor who told me to my face that I don't have endometriosis when I fucking did - and I KNEW I did.
So I've been trying to figure out what to do. Last night I had a dream that I was at the hospital for something and they did the nerve test again, and I was so relieved. Then today I was looking at facebook after my appointment down town, feeling good about standing up for myself, and I came across yet another article discussing the gross underdiagnosis of women with medical conditions because a) women are taught not to stick up for themselves and b) doctors are used to thinking women are complainers, malingerers, mentally ill. So it got me fired up to do SOMETHING... I looked up the name and number of the doctor who did those tests on me, hoping maybe I could go to her directly and ask about my concerns. She was nice, I remember that. Only she doesn't take patients directly. I have to get referred. So that puts me back to the same place - ask my neurologist who doesn't give a fuck, or ask my general practictioner who doesn't really give a fuck either, and knows less.
So I called the family doctor - I guess to schedule a consultation? I mean, is that what you do? Schedule a time to sit down and say "Doctor I'm afraid I might have MS will you please forget about the physical therapy and the anti-itch cream and send me to someone who can help me?" But they're out to lunch, so. I guess I'll... call back?
Ugh. I mean, what the fuck, Universe. Throw me a bone here?
For a very long time now I've had all these crazy things wrong with me. Some are chronic, some come and go. Some can maybe be explained, many can't. But if you look at the list of symptoms for MS, they're pretty much all there.
Trouble is, my neurologist doesn't seem to take me very seriously anymore. We did a few tests when I first started seeing him for my daily headahces six (?) years ago, we tried all these different meds, but now it's pretty much a stack of prescriptions and facetime every three months. I've mentioned the things that concern me, but he's mostly dismissive. Sent me for a sleep test for the aphasia (forgetting common words, like "spatula", or mixing the syllables of words, like "bood goy" instead of "good boy") on the grounds that maybe I'm not getting enough sleep - but since he's the head of the sleep clinic is it really any surprise? But it's more like "Doctor, there are times when my vision gets blurry and I can't see, or it seems like the lights are dimming around me when they aren't" - well, I'm getting up there in age, he says. Or, "Doctor, when I hold my hand in this position my arm shakes and I can't hold my fork". - well, don't hold your hand in that position. I think he thinks I'm a slightly hysterical nearly-middle-aged woman who needs to lose weight and stop looking up symptoms on the internet. And maybe he's right! But on the other hand: aphasia. vision problems. hearing problems. numb hands and feet. tingling and itching for no reason. incontinence, weakness, headaches. balance issues. I'm mean, look it up.
I had EMT (EMG?) tests done in 2010 and 2012 (because I was dropping things back then, too). They showed mild neuropahty and left open a lot of questions that weren't really pursued. I want to be tested again, and I want someone to take me seriously and say, No, it really doesn't look like you have MS or anything else... or, maybe you do. Because if I DO, I want to know now, so they can treat it early. I have little kids for fuck's sake. Sometimes I wish something irrefutable would happen, like I suddenly wouldn't be able to move my arm or something, so they'd take notice. But something like that would mean the disease was further along, and it's not like I want that. Or maybe I don't have it all, so I'm sitting here wishing it on myself? But then my foot goes numb for a few days again, or I try to speak and can't get words out, and I get worried all over again. I'm not making this shit up.
I've been asking, but he's been glossing over it. And I've let him, because what do I know. But in the back of my mind, there's the knowledge that, in many cases, we know more than our doctors do. There's the memory of the (woman) doctor who told me to my face that I don't have endometriosis when I fucking did - and I KNEW I did.
So I've been trying to figure out what to do. Last night I had a dream that I was at the hospital for something and they did the nerve test again, and I was so relieved. Then today I was looking at facebook after my appointment down town, feeling good about standing up for myself, and I came across yet another article discussing the gross underdiagnosis of women with medical conditions because a) women are taught not to stick up for themselves and b) doctors are used to thinking women are complainers, malingerers, mentally ill. So it got me fired up to do SOMETHING... I looked up the name and number of the doctor who did those tests on me, hoping maybe I could go to her directly and ask about my concerns. She was nice, I remember that. Only she doesn't take patients directly. I have to get referred. So that puts me back to the same place - ask my neurologist who doesn't give a fuck, or ask my general practictioner who doesn't really give a fuck either, and knows less.
So I called the family doctor - I guess to schedule a consultation? I mean, is that what you do? Schedule a time to sit down and say "Doctor I'm afraid I might have MS will you please forget about the physical therapy and the anti-itch cream and send me to someone who can help me?" But they're out to lunch, so. I guess I'll... call back?
Ugh. I mean, what the fuck, Universe. Throw me a bone here?