I'm in limbo. Waiting, waiting, waiting.
My grandmother had MS and I watched what it did to her. Now at age 42, I have had symptoms and warning signs for almost 20 years. Early on, when I first started experiencing occurrences, I went to my PCP to discuss my fears. He sort of yelled at me. Without any tests, without any examination at all, he shouted that I absolutely do NOT have MS and that I should quit wasting his time. So for the better part of two decades I have attributed my symptomatic days to poor sleep, my fluctuating weight, poor lifestyle choices, and (more recently) old age. I've been afraid to bring it up with any doctor. And in the many days I've enjoyed between occurrences, it's been easy to convince myself that it is all in my head.
My mother has also had symptoms all this time and every now and then we compare notes and discuss our fears. At the end of each discussion, we reminded one another that the chances of either of us having MS is small, and that we are just crazy for even worrying. It turns out that for almost 20 years, she and I have both withheld a lot from those conversations. So many of our symptoms really *could* be attributed to so many other things, or - in fact - actually all in our heads. For fear of seeming legitimately crazy, I held back. And so many symptoms are just too embarrassing to discuss at all (incontinence comes to mind).
I have clung to the hope that I'm a head case without any physical malfunction at all. The fact that I made it to 30 without a diagnosis made me feel like I was "in the clear." If I had MS, surely I'd have been diagnosed by then. Right? It turns out, doctors can't diagnose what they don't know about or test you for. And I have made a focused effort to avoid doctors at all costs. I haven't had any broken bones, and just about everything else a person might have falls into one of two categories:
1. It's common and easy, and best treated by rest and fluids. The doc will pat you on the head and send you home.
2. It's not common. It's not easily diagnosed. The doc will pat you on the head and send you home, telling you that it's probably within category #1.
So what's the point?
But now...
My mother was recently diagnosed with MS. I hadn't realized how much I clung to the fact that we were both diagnosis-free. If she could be diagnosed at 60+ years old, I guess I'm not as "in the clear" as I might have thought I was. I finally summoned the courage to talk to a PCP about it, and I successfully argued my way into a neuro consult. The neurologist I spoke with was truly wonderful, a very patient and professional and kind man. Blood tests have begun and I'll be scheduled for imaging soon. I know that it is quite likely I will not get a diagnosis of MS. Just because I share symptoms with my MS-diagnosed mother and grandmother does not mean that the same thing is affecting me. This could be so many things. Old age. Poor nutrition. Psychosomatic. So many things. But until I know I will continue to worry.
In the mean time, there is NO ONE to talk to about this. My friends aren't the sort who'd get this kind of thing. I can't discuss with work-friends, because I don't want this getting back to my bosses. I can't worry my brothers or my daughter with this; even if (especially if) I am diagnosed I can't tell them this. My grandmother passed long ago, and probably wasn't "there" enough by the end to have been someone I could talk to in any case. I've shared some of my concern with my boyfriend, but how much can I expect him to really listen to?? And as for mum... talking to her seems inappropriate. She has a lot on her mind, what with her recent diagnosis and all. Besides, it feels insensitive to discuss with her because if (if, if, IF) I do have MS I could get diagnosed and start treatment so much sooner than she did.
I feel overwhelmed and extraordinarily isolated.
My grandmother had MS and I watched what it did to her. Now at age 42, I have had symptoms and warning signs for almost 20 years. Early on, when I first started experiencing occurrences, I went to my PCP to discuss my fears. He sort of yelled at me. Without any tests, without any examination at all, he shouted that I absolutely do NOT have MS and that I should quit wasting his time. So for the better part of two decades I have attributed my symptomatic days to poor sleep, my fluctuating weight, poor lifestyle choices, and (more recently) old age. I've been afraid to bring it up with any doctor. And in the many days I've enjoyed between occurrences, it's been easy to convince myself that it is all in my head.
My mother has also had symptoms all this time and every now and then we compare notes and discuss our fears. At the end of each discussion, we reminded one another that the chances of either of us having MS is small, and that we are just crazy for even worrying. It turns out that for almost 20 years, she and I have both withheld a lot from those conversations. So many of our symptoms really *could* be attributed to so many other things, or - in fact - actually all in our heads. For fear of seeming legitimately crazy, I held back. And so many symptoms are just too embarrassing to discuss at all (incontinence comes to mind).
I have clung to the hope that I'm a head case without any physical malfunction at all. The fact that I made it to 30 without a diagnosis made me feel like I was "in the clear." If I had MS, surely I'd have been diagnosed by then. Right? It turns out, doctors can't diagnose what they don't know about or test you for. And I have made a focused effort to avoid doctors at all costs. I haven't had any broken bones, and just about everything else a person might have falls into one of two categories:
1. It's common and easy, and best treated by rest and fluids. The doc will pat you on the head and send you home.
2. It's not common. It's not easily diagnosed. The doc will pat you on the head and send you home, telling you that it's probably within category #1.
So what's the point?
But now...
My mother was recently diagnosed with MS. I hadn't realized how much I clung to the fact that we were both diagnosis-free. If she could be diagnosed at 60+ years old, I guess I'm not as "in the clear" as I might have thought I was. I finally summoned the courage to talk to a PCP about it, and I successfully argued my way into a neuro consult. The neurologist I spoke with was truly wonderful, a very patient and professional and kind man. Blood tests have begun and I'll be scheduled for imaging soon. I know that it is quite likely I will not get a diagnosis of MS. Just because I share symptoms with my MS-diagnosed mother and grandmother does not mean that the same thing is affecting me. This could be so many things. Old age. Poor nutrition. Psychosomatic. So many things. But until I know I will continue to worry.
In the mean time, there is NO ONE to talk to about this. My friends aren't the sort who'd get this kind of thing. I can't discuss with work-friends, because I don't want this getting back to my bosses. I can't worry my brothers or my daughter with this; even if (especially if) I am diagnosed I can't tell them this. My grandmother passed long ago, and probably wasn't "there" enough by the end to have been someone I could talk to in any case. I've shared some of my concern with my boyfriend, but how much can I expect him to really listen to?? And as for mum... talking to her seems inappropriate. She has a lot on her mind, what with her recent diagnosis and all. Besides, it feels insensitive to discuss with her because if (if, if, IF) I do have MS I could get diagnosed and start treatment so much sooner than she did.
I feel overwhelmed and extraordinarily isolated.
Comment