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Neurology (Expert Forum)
DR.'S BAFFLED
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury.
DR.'S BAFFLED
by rusti64, Mar 12, 2002 12:00AM
i'm posting this notto find a diagnosis, i've given up on that, i'm hoping for ideas on calming my symptoms. ’m hiv+, but all hiv related neurological problems have been ruled out through bloodtests, lumbar
puncture, and brain biopsy. also any cancer was ruled out with the biopsy.
here is a list of my current symptoms:
my voice is weak. I’ve had speech therapy and was told that my ability to form words was fine, but my
ability to inhale was severely impaired. when I speak the muscles in my throat tighten and restrict the air
flow. I also experience a tightness in my head when I speak. if I yawn and then speak upon exhale, my
voice is almost normal and I don’t experience the for mentioned. my ability to inhale is improving and
pushing out air is getting stronger. also, if i’m talking to myself , there is not tension or pressure. only
when speaking to someone.
I’ve been to a ENT dr. who said there was nothing physically wrong with my throat.
I can’t smile on demand. the left side of my upper lip won’t lift. it will if I laugh or smile as a
response(involuntary). I can’t close my left eye by itself, only with my right or if I yawn.
I also salivate excessively, especially when i’m concentrating on something.
on my left side; I have almost no use of my left arm and hand. I can retract but not extend. I’m slowly
getting slight shoulder shrugging ability back. I have reaction spasticity. if I use my right hand to wash,
brush , or most any activity it causes my left arm and hand to constrict. it also causes the muscles in my
neck, on the left side, to tighten to the point of cutting off my air. my head also twists to the left. as soon
as I stop, it relaxes. even bowel or bladder movements cause the hand to constrict. when washing my
face, if I’m washing the right side my left arm extends, if washing the left, it constricts. when my left side
reacts it causes the motor skills in my right hand to slow down.
my left leg is a little less severe. I experience spasticity in the foot that either causes a tippy- toe effect
or involuntary movement. every time I stand up, my foot will tippy-toe, it takes a short time for it to relax.
when I do walk, I can do heal to toe, but if I stop and stand for any period of time, it goes back to spastic
and takes a while to calm down. I can only walk with tight shoes on. barefoot is impossible. my left hip
feels stiff when I stand most of the time. I can bend my leg in every position except when I’m standing.
I have a small window in the morning where I can walk around the house without a cane. this usually
only last for roughly an hour. when I do use a cane it’s mostly for security, not strength. at home I
usually use a wheelchair do to only having one useful arm. in the house my left side tone is less than
when I’m outside or in an unfamiliar place. this makes it difficult to show healthcare providers my true
functioning level.
I also have a strong startle reflex. the slightest noise makes my left arm shudder violently. this is not a
constant occurrence though.
low barometric pressure effect my symptoms as well.
i’ve been on baclofen and had botox injections to help reduce the tone on my left side. each increased
the symptoms. i’ve also been on ativan, but that did nothing as well.
puncture, and brain biopsy. also any cancer was ruled out with the biopsy.
here is a list of my current symptoms:
my voice is weak. I’ve had speech therapy and was told that my ability to form words was fine, but my
ability to inhale was severely impaired. when I speak the muscles in my throat tighten and restrict the air
flow. I also experience a tightness in my head when I speak. if I yawn and then speak upon exhale, my
voice is almost normal and I don’t experience the for mentioned. my ability to inhale is improving and
pushing out air is getting stronger. also, if i’m talking to myself , there is not tension or pressure. only
when speaking to someone.
I’ve been to a ENT dr. who said there was nothing physically wrong with my throat.
I can’t smile on demand. the left side of my upper lip won’t lift. it will if I laugh or smile as a
response(involuntary). I can’t close my left eye by itself, only with my right or if I yawn.
I also salivate excessively, especially when i’m concentrating on something.
on my left side; I have almost no use of my left arm and hand. I can retract but not extend. I’m slowly
getting slight shoulder shrugging ability back. I have reaction spasticity. if I use my right hand to wash,
brush , or most any activity it causes my left arm and hand to constrict. it also causes the muscles in my
neck, on the left side, to tighten to the point of cutting off my air. my head also twists to the left. as soon
as I stop, it relaxes. even bowel or bladder movements cause the hand to constrict. when washing my
face, if I’m washing the right side my left arm extends, if washing the left, it constricts. when my left side
reacts it causes the motor skills in my right hand to slow down.
my left leg is a little less severe. I experience spasticity in the foot that either causes a tippy- toe effect
or involuntary movement. every time I stand up, my foot will tippy-toe, it takes a short time for it to relax.
when I do walk, I can do heal to toe, but if I stop and stand for any period of time, it goes back to spastic
and takes a while to calm down. I can only walk with tight shoes on. barefoot is impossible. my left hip
feels stiff when I stand most of the time. I can bend my leg in every position except when I’m standing.
I have a small window in the morning where I can walk around the house without a cane. this usually
only last for roughly an hour. when I do use a cane it’s mostly for security, not strength. at home I
usually use a wheelchair do to only having one useful arm. in the house my left side tone is less than
when I’m outside or in an unfamiliar place. this makes it difficult to show healthcare providers my true
functioning level.
I also have a strong startle reflex. the slightest noise makes my left arm shudder violently. this is not a
constant occurrence though.
low barometric pressure effect my symptoms as well.
i’ve been on baclofen and had botox injections to help reduce the tone on my left side. each increased
the symptoms. i’ve also been on ativan, but that did nothing as well.
Doctor's Answer
by CCF-Neuro-M.D.-JT, Mar 13, 2002 12:00AM
Sorry to hear about your symptoms. You mentioned that someone atrributed your symptoms to an ?"infection" that's clearing up. If there was something to biopsy in your brain, then I'm guessing there was some abnormal lesion on the MRI. Depending on what and where the lesion was, it could certainly have been the cause of your symptoms.
As for symptomatic relief, there are other antispastic meds out there like zanaflex and valium to help with the left side. Also physical and occupational therapy expecially stretching exercises could be helpful. The left eye should also be protected if it cannot close properly with a tear solution to keep it moist and perhaps a patch at night. Otherwise you leave yourself at risk for corneal infections or ulcerations. Finally, if the drooling is a major problem there are other meds you could take (yet another one) that could help "dry" you out like Artane but keep in mind it may make you sleepy. Hope that helps. Good luck.
As for symptomatic relief, there are other antispastic meds out there like zanaflex and valium to help with the left side. Also physical and occupational therapy expecially stretching exercises could be helpful. The left eye should also be protected if it cannot close properly with a tear solution to keep it moist and perhaps a patch at night. Otherwise you leave yourself at risk for corneal infections or ulcerations. Finally, if the drooling is a major problem there are other meds you could take (yet another one) that could help "dry" you out like Artane but keep in mind it may make you sleepy. Hope that helps. Good luck.
i go to pt 2x a week.
i was on cidofovir iv because they believed i had pml, but after the biopsy i stoppedon the right side of my body; the only problem I posses is slow motor skills with my right hand. I had lost
all function with my right hand for about 2 months, 6/99-7/99, when it returned I had severe tremors for
about 2 more months. the tremors have stopped.
I also have a strong startle reflex. the slightest noise makes my left arm shudder violently. this is not a
constant occurrence though.I experience no pain or discomfort; any extreme emotion increases all above symptoms.
i've been in therapy for almost 21/2 years now and recieve biweekly muscle massages. i have spells of increased symptoms for about 4-5 days always followed by increased functioning. this is why the last neurologist felt whatever was causing my problems was healing.
thank you for your time.