Hi,
So, I wrote a hugely long ridiculous post, and then accidentally erased it. To sum up:
I have a whole lot of stuff that could be MS, with a major flare-up last winter and another (I hope) winding down now.
I'm a distance runner, a single mom of two daughters, and I was supposed to run my second marathon last month, except I only ran half of it because about eight miles in, I couldn't bend or move my left leg right, or feel most of my foot. And there was pain. I had issues in training too, skipped a couple long runs because my left calf cramped up so badly I was afraid I'd tear the muscle trying to run on it.
I was very healthy, but since I started having issues last month, I've pretty much lost bladder function and depend entirely on catheters. My left leg is cranky, my gait is often odd, especially when I'm tired, and I've fallen several times. I have frequent numbness, pain, tingling, and cramping in my left arm, hand, calf, and foot, and pain up my left leg into my hip and abdomen. My urologist sent me to a neuro, who thought for sure I have MS--except my brain MRI was normal, so she told me over the phone last week that it isn't MS. I also had a c-spine MRI, but without contrast, because first she was looking for stenosis.
I thought at the time her pronouncement that I don't have MS was good news. But the more I read, the more I am learning that it's more complicated that a normal/not normal brain MRI.
And the more I learn, the more I realize just how much various things have deteriorated (like typing and writing--I'm left-handed), things that I ignored, or wrote off as just tiredness and training too bad, because single-mom-runner.
Things that I never connected to anything, or to totally disparate things, suddenly seem to scream MS--like how a few days ago, I took a steamy hot shower in the middle of the day. I don't usually do that, because I'm always tired after showering. Sometimes, after a lot, hot shower, I'm so tired I feel weak and dizzy and sick, but I usually take my longest, hottest showers after long runs, so I thought it was from running, or that I was a little dehydrated. But then this week, just a mid-afternoon shower--and was weak and dizzy and in pain and felt general shaky and too unwell to do much of anything for about two hours, and I thought about how heat can trigger MS symptoms. And a shower became a disturbing clue, or a sign of my grown paranoia.
I was using poker chips last week to keep score in a board game. And I couldn't remember which colors were which number. Even though I'm used them this way for twenty years. Suddenly I saw a cognitive deficit.
So, I'm afraid that I'm embarking on a potentially years-long adventure in the limbo-land of undiagnosed, untreated neuro issues. That's a scary and frustrating thought.
So, hey, nice to be here, glad to have found this place, etc
So, I wrote a hugely long ridiculous post, and then accidentally erased it. To sum up:
I have a whole lot of stuff that could be MS, with a major flare-up last winter and another (I hope) winding down now.
I'm a distance runner, a single mom of two daughters, and I was supposed to run my second marathon last month, except I only ran half of it because about eight miles in, I couldn't bend or move my left leg right, or feel most of my foot. And there was pain. I had issues in training too, skipped a couple long runs because my left calf cramped up so badly I was afraid I'd tear the muscle trying to run on it.
I was very healthy, but since I started having issues last month, I've pretty much lost bladder function and depend entirely on catheters. My left leg is cranky, my gait is often odd, especially when I'm tired, and I've fallen several times. I have frequent numbness, pain, tingling, and cramping in my left arm, hand, calf, and foot, and pain up my left leg into my hip and abdomen. My urologist sent me to a neuro, who thought for sure I have MS--except my brain MRI was normal, so she told me over the phone last week that it isn't MS. I also had a c-spine MRI, but without contrast, because first she was looking for stenosis.
I thought at the time her pronouncement that I don't have MS was good news. But the more I read, the more I am learning that it's more complicated that a normal/not normal brain MRI.
And the more I learn, the more I realize just how much various things have deteriorated (like typing and writing--I'm left-handed), things that I ignored, or wrote off as just tiredness and training too bad, because single-mom-runner.
Things that I never connected to anything, or to totally disparate things, suddenly seem to scream MS--like how a few days ago, I took a steamy hot shower in the middle of the day. I don't usually do that, because I'm always tired after showering. Sometimes, after a lot, hot shower, I'm so tired I feel weak and dizzy and sick, but I usually take my longest, hottest showers after long runs, so I thought it was from running, or that I was a little dehydrated. But then this week, just a mid-afternoon shower--and was weak and dizzy and in pain and felt general shaky and too unwell to do much of anything for about two hours, and I thought about how heat can trigger MS symptoms. And a shower became a disturbing clue, or a sign of my grown paranoia.
I was using poker chips last week to keep score in a board game. And I couldn't remember which colors were which number. Even though I'm used them this way for twenty years. Suddenly I saw a cognitive deficit.
So, I'm afraid that I'm embarking on a potentially years-long adventure in the limbo-land of undiagnosed, untreated neuro issues. That's a scary and frustrating thought.
So, hey, nice to be here, glad to have found this place, etc
I really do hope that it is not MS, but based on my experience..if you strongly suspect MS you would do well to try and get a referral to an MS specialist. I say this only because my first neuro (general neurologist) missed my diagnosis. He did the wrong protocol on my MRI's (spinal and brain) and misread the results of my lumbar puncture (said it was negative and it was positive..9 oligoclonal bands and an elevated Igg Index). Prior to the MRI and lumbar my neuro was 99% certain it was MS based on my symptoms alone. My case was very obvious....foot drop...leg weakness...spasticity...etc. EMG and blood work had ruled out about every other possibility. I ended up wasting months when I could have been diagnosed and treated properly.
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