Well, it certainly is nice to be cured of Hepatitis C. I just hope the "cure" lasts. I will continue to be tested for the next several months ... here's crossing fingers and toes that it holds.
I'm still after the correct diagnosis of my neurodegenerative disease, especially now that the Hep C is behind me. I was told that I have a neurodegenerative disease by my local neurologist, but thus far there's no definitive answer as to whether it's multiple sclerosis or some other condition. Dr. A said he'd diagnose me with MS if I had lesions in my spinal cord, which I don't--but I do have them all through my brain. He also said I was a little "old"--mid-50's at the time--for an MS diagnosis (though late-onset MS IS a thing--and, of course, I've had mysterious hospitalizations and pregnancy troubles that may well have been due to whatever this thing is messing up my brain.)
Lest you think I'm obsessed with this brain thing, let me say that I've had a copy of Dr. A's report on his (abnormal) neurological exam of me and referral to a Johns Hopkins neurologist for over a year, but I've never opened the sealed envelope. I guess I don't really want to know. Pretty scary stuff.
At the same time, not knowing sucks. It would sure be nice to have a diagnosis so all these weird symptoms will no longer be thought to be coming from my imagination.
Some of the symptoms I'd hoped would clear up with the Hep C cure have not cleared up, and that's a bit of a bummer. A lot of a bummer, actually. For instance, the debilitating sleep disorders--idiopathic hypersomnolence, circadian rhythm disorder, sleep apnea, REM sleep disorders, and a history of hypnogogic hallucinations--are still with me. The good thing is that, when I actually AM awake, my brain is much clearer. Brain fog is a common symptom with Hep C, and I definitely suffered from that. I"m amazed when driving around how crystal clear the world looks now, and that alone is a miracle.
I'm pretty sure my sleep disorders are due to some kind of sleep-disordered breathing, but what is causing that?
Another look-see of my signs and symptoms, as well as what Dr. A has told me in my visits to him, has led me to wonder whether the problem may be something called primary lateral sclerosis. This is related to amyotrophic lateral sclerosis (ALS) of bucket-challenge/Lou Gehrig/Stephen Hawkins notoriety but does not tend to move as quickly.
One of the most obvious signs of damage in my neurological exams is hyper-reflexivity. My reflexes have always been normal in the past, but about three years ago Dr. A hit my bony right knee with a hammer and my right leg flew up so high I nearly clipped him in the chin. The reflex was so strong it sort of traveled through my body, and my left leg went halfway up, too. (When I saw Dr. Neurolobitch at Johns Hopkins, her intern who tested me first was struck by the vigor of my reflexes, telling me she wished other medical students could see them--but Dr. N, who was convinced, I can't help but think, that I was faking, downplayed this.) I know I'm not faking, and this is a sign of upper neuron disease.
Upper neuron disease can also affect balance (remember my weird fall while walking and talking at the same time--an early sign of neurodegenerative disease--a few Christmases ago? My big, fat, swollen nose when I hit the pavement beak-first?) I'm clumsy a lot. Even Honey has started making fun of me for how much I bang into things, knock things over, drop things, and generally wreak havoc wherever I go.
The disease can also affect breathing muscles and processes, which leads to weakness in skeletal muscles, and I'm pretty sure I have this in spades. I've been complaining of my exhaustion on the slightest exercise only to be foiled by incorrect or poorly executed tests. "Unless it happens in my office," my pulmonologist tells me, "it isn't happening." I contend I wasn't given the right tests, and at least one that I was given was messed up by the technician. All I know is that my breathing/stamina issues are real. I've been complaining of them since my near-respiratory-breakdown in Europe during the 2013-2014 holidays.
The disease is also known for a "sense of weakness and early fatigue," according to Singer, et al., yet generally without weakness found in neurological tests. That fits me to a T.
Upper neurons, by the way, do this:
I'm still after the correct diagnosis of my neurodegenerative disease, especially now that the Hep C is behind me. I was told that I have a neurodegenerative disease by my local neurologist, but thus far there's no definitive answer as to whether it's multiple sclerosis or some other condition. Dr. A said he'd diagnose me with MS if I had lesions in my spinal cord, which I don't--but I do have them all through my brain. He also said I was a little "old"--mid-50's at the time--for an MS diagnosis (though late-onset MS IS a thing--and, of course, I've had mysterious hospitalizations and pregnancy troubles that may well have been due to whatever this thing is messing up my brain.)
Lest you think I'm obsessed with this brain thing, let me say that I've had a copy of Dr. A's report on his (abnormal) neurological exam of me and referral to a Johns Hopkins neurologist for over a year, but I've never opened the sealed envelope. I guess I don't really want to know. Pretty scary stuff.
At the same time, not knowing sucks. It would sure be nice to have a diagnosis so all these weird symptoms will no longer be thought to be coming from my imagination.
Some of the symptoms I'd hoped would clear up with the Hep C cure have not cleared up, and that's a bit of a bummer. A lot of a bummer, actually. For instance, the debilitating sleep disorders--idiopathic hypersomnolence, circadian rhythm disorder, sleep apnea, REM sleep disorders, and a history of hypnogogic hallucinations--are still with me. The good thing is that, when I actually AM awake, my brain is much clearer. Brain fog is a common symptom with Hep C, and I definitely suffered from that. I"m amazed when driving around how crystal clear the world looks now, and that alone is a miracle.
I'm pretty sure my sleep disorders are due to some kind of sleep-disordered breathing, but what is causing that?
Another look-see of my signs and symptoms, as well as what Dr. A has told me in my visits to him, has led me to wonder whether the problem may be something called primary lateral sclerosis. This is related to amyotrophic lateral sclerosis (ALS) of bucket-challenge/Lou Gehrig/Stephen Hawkins notoriety but does not tend to move as quickly.
One of the most obvious signs of damage in my neurological exams is hyper-reflexivity. My reflexes have always been normal in the past, but about three years ago Dr. A hit my bony right knee with a hammer and my right leg flew up so high I nearly clipped him in the chin. The reflex was so strong it sort of traveled through my body, and my left leg went halfway up, too. (When I saw Dr. Neurolobitch at Johns Hopkins, her intern who tested me first was struck by the vigor of my reflexes, telling me she wished other medical students could see them--but Dr. N, who was convinced, I can't help but think, that I was faking, downplayed this.) I know I'm not faking, and this is a sign of upper neuron disease.
Upper neuron disease can also affect balance (remember my weird fall while walking and talking at the same time--an early sign of neurodegenerative disease--a few Christmases ago? My big, fat, swollen nose when I hit the pavement beak-first?) I'm clumsy a lot. Even Honey has started making fun of me for how much I bang into things, knock things over, drop things, and generally wreak havoc wherever I go.
The disease can also affect breathing muscles and processes, which leads to weakness in skeletal muscles, and I'm pretty sure I have this in spades. I've been complaining of my exhaustion on the slightest exercise only to be foiled by incorrect or poorly executed tests. "Unless it happens in my office," my pulmonologist tells me, "it isn't happening." I contend I wasn't given the right tests, and at least one that I was given was messed up by the technician. All I know is that my breathing/stamina issues are real. I've been complaining of them since my near-respiratory-breakdown in Europe during the 2013-2014 holidays.
The disease is also known for a "sense of weakness and early fatigue," according to Singer, et al., yet generally without weakness found in neurological tests. That fits me to a T.
Upper neurons, by the way, do this:
Second-order motor neurons are upper motor neurons whose cell bodies reside primarily in the precentral gyrus or the primary motor cortex of the frontal lobe. They send fibers that directly connect to lower motor neurons in the brain stem that innervate the muscles of the face, pharynx, and larynx or to lower motor neurons in the spinal cord that innervate the limb, trunk, and respiratory muscles. (http://emedicine.medscape.com/article/1171782-overview?pa=8dH4jbWcJ9EMQ8XXBYmInAn4vTn47ZAhyNXbVN23XbpfaQjLSWefbWko3s%2FTTYy8Dc%2FQpD2oKbvJtxcVOoY35zRbGMQ7s%2F89oYHt2gMBBbM%3D)So, I guess it's time to open that envelope and see what Dr. A said about my signs and symptoms. These, I know:
- Diffuse, periventricular white matter lesions;
- Brisk reflexes;
- History of fascilations;
- Several diagnosed sleep disorders;
- Breathing/stamina issues (as yet unverified by doctor but chronic in "real" life);
- Fairly extreme stiffness when standing up or getting up from bed;
- Potential laryngeal pharyngeal reflux--some (unverified by doctor) signs and symptoms of this disorder;
- Aphasia issues;
- Urinary urgency and incontinence (fun).
My age when these signs/symptoms really flared into something undeniable was 54, the mean age for PLS onset (Tartaglia, et al.)
I also have a history of 5th cranial (trigeminal) nerve damage. This, however, is apparently not related to primary lateral sclerosis or upper neuron disease. Lucky me, there's something else wrong with my brain.
One thing for sure, I need to bring up these issues when I next see my pulmonologist. He has cowed me into not telling him any more symptoms because he makes me feel like I have Munchausen's or some crazy malingering disorder. But I've never shown him Dr. A's neurology report. I need to open it and see what it says, and then I need to give a copy to Dr. P.
One thing for sure, I need to bring up these issues when I next see my pulmonologist. He has cowed me into not telling him any more symptoms because he makes me feel like I have Munchausen's or some crazy malingering disorder. But I've never shown him Dr. A's neurology report. I need to open it and see what it says, and then I need to give a copy to Dr. P.
Stay tuned, sports fans!
And the envelope says ....
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