I think I am in the club
Hey Everyone out there, in here
. I didn't really see this coming. But I think I am on my way to officially in your club.
Here is my story.
Less than a month ago, I had a brain MRI, without contrast, to investigate possible reasons behind different headaches I had been having, eye twitches that went on for several months, almost on a daily basis, and some tremors in my hand with use. I had thought the tremors and twitches were good to tell the rheumatologist I check in with, because I have big time hypermobility of joints and ligaments....she said that it sounded like a "central tremor," and I should have it checked with a neurologist. That was months and months ago. At that time, my husband had announced his wish to divorce, my 12 year old was having some serious feelings flying regarding her father (unrelated to divorce - just realizing he wasn't really as kind as he should be). My hands were otherwise full, and it didn't seem like an emergency, so I pushed it aside.
But about 6 weeks ago, I had a very bad car accident on the freeway. My head really was affected, I was scared, and it pushed me to seek a neurologist. Ironically, she was way more interested in the symptoms I described here than my current headaches and such.
I got a copy of the MRI results. And a CD. What I see is lots of white spots on my brain. What the report names these is "disease of the small vessels of the white matter." He doesn't seem to know why I have so many at my age (I'll share - I just turned 47). I am left concerned and wanting more info. Google refers me to Dementia websites when I type in small vesssel disease...
I call around and get a neurologist who has a cancellation, and soon. I saw him last week. He had the personality of cardboard, but he was thorough. I had a hard time answering all his questions. It was hard for me to access the information he wanted about the headaches, the visual migraines and such. Later I remembered that the headaches that started this year were much more sharp and dagger like. I remembered that I was having a lot of stuff in my visual field, which had led me to a optomotrist, who concluded that they were probably migraine related, and I should tell my doctor that....I had forgotten....
So the neurologist with cardboard personality goes away for about 20 minutes with my disc, and his notes, and comes back, asking who had talked to me about my MRI. No one, but I knew I had spots. And he sits real close to me (close for a doctor) and says we need to outrule MS. I wasn't entirely surprised, perhaps even a little relieved. Before I got the radiologist's report, my best guess was MS. Somehow, that is favorable than losing my memory at 47. He said a lot of what I described could be part of a MS "pattern." Is that the right word? Even the hypermobility, which often is related to an overproduction in collagen, which can affect the blood vessels, could be part of MS, I guess....
The backstory of my body is that I have had crappy immunity my whole life. I grew up in the Northwest, where I think there is more MS there than other parts of the country...Anyway. I got sick a lot from the time I was quite young. I got a wicked case of Mono in my second year of college, really knocked me down. I was traveling shortly after, and it seemed I had a second, not quite so bad case of it again, just from wearing myself down too much. Fatigue has been an issue maybe as far back as junior high, for sure since college. It has seemed for a long time that I cannot take too much stress, too much pressure, physically or emotionally, or it can just knock me down, and it takes way too long to "fluff" back up again, longer than others would take. It's funny, because as a person, I think I am strong. My spirit is super strong. But my body brakes too easily.
I started having visual migraines in my early forties. Just a few. But probably, shortly thereafter, I started seeing white spots in my field of vision. That lasted for a while, months or a year, and then they went away. Then, in this last year, the spots were back, more frequent, and I think different. They have gone again. My eye quit twitching, too. My hand still tremors with use, sometomes without use, and now the other one seems to be getting in on the act a little. Clearly, something is up.
The neurologist is requesting a second MRI, with contrast, of my brain and my neck. He says you cannot see any active disease process without contrast, and you can't see any active bleeds....Also, today I got a spinal tap - four vials of precious spinal fluid. I hope they get everything imaginable out of them. Three are spoken for, I guess the fourth is in case they think up more stuff to consider...Friday I get nerve conduction testing.
Neurologist said that it is possible the migraines caused the spots, but somehow he was clearly thinking that was a whole lot of spots for the number of migraines I was describing. If that is the case, I imagine I will be put on medicine to control the silent migraines that are obviously happening.
Oh, let me tell you a few other symptoms I have had over time. Pain. Just pain that is hard to understand, an achiness, like hurting to the bone. Rheumatology was thinking that it was my hypermobility, which causes me to easily have my joints in the wrong place, which would cause wear and tear, which would cause other muscles to work harder to keep me steady, hence the pain. But maybe it is something else, too....And also, about seven years ago, I had what the ER thought was viral meningitis. I forget which end of the spine it started in. I think it was at the base of my spine, and the pain worked its way up to my neck - it was searing, and in its own way, rivaled the labor I was in with my daughter, which included transverse baby (back labor) for more than 24 hours...no pain killers could touch this. I could barely move millimeters. Anyway, I asked the doc if this could cause lesions on my brain. He said it could, but since they didn't do a spinal tap to make sure, there was no way to know, and we still had to outrule active disease in my brain.
This is scary stuff. My daughter needs me, badly. My ex husband-to-be is not a super nice guy. He has moods, he has temper, he has anger issues, he is controlling. I must be here for her.
I was wondering if you guys have advice. Have you heard that MS is worse in high elevations? I am in the Southwest.
On happy notes, I have two dogs that are so loved, a rescue rabbit that I am just fostering. I still have a sense of humor. I am very open to complementary medicine. I am vegetarian and love to eat good food, and sometimes bad food:rolleyes. I need to reimagine my life in the work world, as I haven't worked since before my daughter was born - in an office at least. But my gigs have tended to be very demanding, tons of energy and hours gigs. I am thinking that maybe that is not what is called for in this era, no?
Well, I will wait to see what people have to say. I have said plenty. If I posted this in the wrong place, please please forgive me, and I can cut and paste it elsewhere if it makes people feel better.
Thanks for listening.
. I didn't really see this coming. But I think I am on my way to officially in your club.Here is my story.
Less than a month ago, I had a brain MRI, without contrast, to investigate possible reasons behind different headaches I had been having, eye twitches that went on for several months, almost on a daily basis, and some tremors in my hand with use. I had thought the tremors and twitches were good to tell the rheumatologist I check in with, because I have big time hypermobility of joints and ligaments....she said that it sounded like a "central tremor," and I should have it checked with a neurologist. That was months and months ago. At that time, my husband had announced his wish to divorce, my 12 year old was having some serious feelings flying regarding her father (unrelated to divorce - just realizing he wasn't really as kind as he should be). My hands were otherwise full, and it didn't seem like an emergency, so I pushed it aside.
But about 6 weeks ago, I had a very bad car accident on the freeway. My head really was affected, I was scared, and it pushed me to seek a neurologist. Ironically, she was way more interested in the symptoms I described here than my current headaches and such.
I got a copy of the MRI results. And a CD. What I see is lots of white spots on my brain. What the report names these is "disease of the small vessels of the white matter." He doesn't seem to know why I have so many at my age (I'll share - I just turned 47). I am left concerned and wanting more info. Google refers me to Dementia websites when I type in small vesssel disease...
I call around and get a neurologist who has a cancellation, and soon. I saw him last week. He had the personality of cardboard, but he was thorough. I had a hard time answering all his questions. It was hard for me to access the information he wanted about the headaches, the visual migraines and such. Later I remembered that the headaches that started this year were much more sharp and dagger like. I remembered that I was having a lot of stuff in my visual field, which had led me to a optomotrist, who concluded that they were probably migraine related, and I should tell my doctor that....I had forgotten....
So the neurologist with cardboard personality goes away for about 20 minutes with my disc, and his notes, and comes back, asking who had talked to me about my MRI. No one, but I knew I had spots. And he sits real close to me (close for a doctor) and says we need to outrule MS. I wasn't entirely surprised, perhaps even a little relieved. Before I got the radiologist's report, my best guess was MS. Somehow, that is favorable than losing my memory at 47. He said a lot of what I described could be part of a MS "pattern." Is that the right word? Even the hypermobility, which often is related to an overproduction in collagen, which can affect the blood vessels, could be part of MS, I guess....
The backstory of my body is that I have had crappy immunity my whole life. I grew up in the Northwest, where I think there is more MS there than other parts of the country...Anyway. I got sick a lot from the time I was quite young. I got a wicked case of Mono in my second year of college, really knocked me down. I was traveling shortly after, and it seemed I had a second, not quite so bad case of it again, just from wearing myself down too much. Fatigue has been an issue maybe as far back as junior high, for sure since college. It has seemed for a long time that I cannot take too much stress, too much pressure, physically or emotionally, or it can just knock me down, and it takes way too long to "fluff" back up again, longer than others would take. It's funny, because as a person, I think I am strong. My spirit is super strong. But my body brakes too easily.
I started having visual migraines in my early forties. Just a few. But probably, shortly thereafter, I started seeing white spots in my field of vision. That lasted for a while, months or a year, and then they went away. Then, in this last year, the spots were back, more frequent, and I think different. They have gone again. My eye quit twitching, too. My hand still tremors with use, sometomes without use, and now the other one seems to be getting in on the act a little. Clearly, something is up.
The neurologist is requesting a second MRI, with contrast, of my brain and my neck. He says you cannot see any active disease process without contrast, and you can't see any active bleeds....Also, today I got a spinal tap - four vials of precious spinal fluid. I hope they get everything imaginable out of them. Three are spoken for, I guess the fourth is in case they think up more stuff to consider...Friday I get nerve conduction testing.
Neurologist said that it is possible the migraines caused the spots, but somehow he was clearly thinking that was a whole lot of spots for the number of migraines I was describing. If that is the case, I imagine I will be put on medicine to control the silent migraines that are obviously happening.
Oh, let me tell you a few other symptoms I have had over time. Pain. Just pain that is hard to understand, an achiness, like hurting to the bone. Rheumatology was thinking that it was my hypermobility, which causes me to easily have my joints in the wrong place, which would cause wear and tear, which would cause other muscles to work harder to keep me steady, hence the pain. But maybe it is something else, too....And also, about seven years ago, I had what the ER thought was viral meningitis. I forget which end of the spine it started in. I think it was at the base of my spine, and the pain worked its way up to my neck - it was searing, and in its own way, rivaled the labor I was in with my daughter, which included transverse baby (back labor) for more than 24 hours...no pain killers could touch this. I could barely move millimeters. Anyway, I asked the doc if this could cause lesions on my brain. He said it could, but since they didn't do a spinal tap to make sure, there was no way to know, and we still had to outrule active disease in my brain.
This is scary stuff. My daughter needs me, badly. My ex husband-to-be is not a super nice guy. He has moods, he has temper, he has anger issues, he is controlling. I must be here for her.
I was wondering if you guys have advice. Have you heard that MS is worse in high elevations? I am in the Southwest.
On happy notes, I have two dogs that are so loved, a rescue rabbit that I am just fostering. I still have a sense of humor. I am very open to complementary medicine. I am vegetarian and love to eat good food, and sometimes bad food:rolleyes. I need to reimagine my life in the work world, as I haven't worked since before my daughter was born - in an office at least. But my gigs have tended to be very demanding, tons of energy and hours gigs. I am thinking that maybe that is not what is called for in this era, no?
Well, I will wait to see what people have to say. I have said plenty. If I posted this in the wrong place, please please forgive me, and I can cut and paste it elsewhere if it makes people feel better.
Thanks for listening.
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