Aa
Lack of sensitivity, tingling, numbness in arms / legs
SORRY - THIS IS A REALLY LONG POST!!
BACKGROUND
I have tourettes syndrome - and was heavily medicated thru middle, and high school for it.
not currently on any meds, since completing high school.
born 1980
English decent
Male - 256 lbs
no family history of ANYTHING - except have one cousin on my dad's side with MS
Even in childhood, I have ALWAYS been stiff and sore when i wake up in the mornings, or when i have been sitting still for more than an hour or 2.. long car rides, sitting at a desk, etc... never looked into it, because its all i knew - thought it was normal. didn't find out otherwise till i was 19 years old. everyone said im too young to have problems, so i didnt worry about it, and went on with life!
about 8 years ago, I was driving my car for a delivery service... without any explanation, and all at once, part of the right side of my face, pinky, and ring finger on right hand, and my tongue went numb.
I went to the ER, they did lots of tests, found out nothing, and referred me to neurology....
they thought it was possibly MS, but cound'nt be sure.. so said wait and see what happens.
3 years after that, I was working as a satellite TV installer, and got a 120v electric shock from one hand to the other, right across the chest..... instantly the partial numbness was in both hands, and arms - had headache, chest pain, and felt really weak... ER couldnt find anything
the next morning, I tried to get out of bed, and fell on my face... I couldnt walk! it took me a few hours, but i managed to get up, and move around... from that point on, I have always have had to give concious thought to walking, and moving around. If i forget that im holding onto something, ill drop it.. when i try to answer the phone, i throw it behind my head.. because im not holding it tight enough. I was EXTREMELY sensitive to cold, and anything that had any vibration. (electric razor, lawnmower.. cellpone on vibrate mode) I had to put on gloves to grab anything from the fridge! the cold causes INSTANT shooting pain in whichever arm i tried to pick something up with.
my hands and arms wern't pins and needles numb, but like someone had turned down the sensitivity... WAY down. unless I give things conscious thought, I forget where my limbs are, and i have difficulty walking.
also, somewhere around this time frame, when i lie down, both arms started to go totally pins and needles numb.
it wakes me up at night... also my arms feel like they are in blood-pressure cuffs when im standing up.
the only comfortable position, is sitting slightly reclined in a soft chair.
this time, the neurologist did EVERYTHING - EMG, MRI's extensive blood work, checked for heavy metal levels..
other than slightly elevated arsenic levels ( I live in NW usa), everything was totally normal.
once again, i was told to wait, and see what happens.
this was about 3-4 years ago.
Now I am 31 years old, and for the most part healthy - I dont smoke, or drink, or use drugs of any kind....
but these problems i have been having keep slowly getting worse. last summer, my lower back, and back of my legs started feeling weird... then numb... it came and went for a few months....
at that time, I was working in law enforcement - running around with 35 lbs of gear on, VERY physical activity.
finally, it got to the point where i was not able to stand up for more than 30 min at a time.. then 20 min.... now I cant stand for more than 3-4 minutes without my lower back, and legs going numb, and then im unable to stand or walk.
I started using an electric wheelchair to do my shopping, and for other occasions that required me to be on my feet for any period of time. I only use the chair maybe 20% of the time - i dont want to become reliant on it!
i went to a chiropractor - anytime they preformed adjustments, i had weird tingling sensations in both my arms..
and also, i went bowling a few times, and EVERY TIME i did - things seemed to get worse... and stay that way!
sometimes my back will pop, and it causes the weird sensations that travel my arms as well...
every couple of months, things suddenly feel different.. like my perception of the sense of touch... when this happens, i find myself wandering around, feeling everything in the house to try and get a grasp of whats going on. things are always changing!
I referred myself to a spine specialist.
she kept saying there couldnt be anything wrong with me - im too young! and using a wheelchair is bad! i convinced her to do a FULL cervical spine MRI..
LO AND BEHOLD.. i have wedged vertebrae!!, and bone degeration from them rubbing together! and nodules and some other stuff.. shoemans/kiposis disease or something.... (I know i spelled it wrong) essentially i was born with oddly shaped vertebrae.
I was so happy to find something!!! after so many years!!! but now everyones telling me, that these issues, dont have any effect on tingling or numbness... they sent me to physical therapy.. it made things worse...
how can these results mean nothing??? i can see a deep inward cuve to my spine when im standing, and trying to stand up really straight hurts like hell!!
also, I i stand up and sit down too many times within a few minutes, things get really painful, and i get short of breathe.. its like im in shock or something, and hard to breathe, feels like i jumped into a cold lake, from a hot tub...(to explain the shortness of breath) - so i make sure i dont do more than 2 or 3 sit-to-stands in a half hour window.
today(9/19/2011) i had an EMG (first in 3 years) tested my right arm, leg, and foot. during the test, my leg felt weird and my hand as well... gotta love needles and electricity... but i was unable to move my foot, or lower right leg!!! its like it was paralysis or something!.. i had to have help getting dressed... and help getting back into my wheelchair!.
BOTH neurologists in the room insisted that the test couldn't have caused anything like this!! and then they got up and left!!
on the way out they said "well if it doesn't get better you can goto the ER" I was flabbergasted! they didnt care! or maybe they thought i was making it up>? i dunno.. sometimes i feel like this is all in my head, but then i trip on something, and fall on my face, and realize its VERY REAL.
the last times ive had EMG's - i find it very hard to use the limb that they tested for a few hours.... i try to move, and things just respond very slowly... is this normal?
MRI scans also make me VERY disoriented... the effects of an MRI usually last 4-5 hours, and i cant drive afterwards, or walk at all. and i can barley speak... it takes a lot of work to get thoughts formed into words.
back to today.....
after about 2 hours, i regained control of my right foot, and leg... its VERY stiff and sore now.
continued in next post...........
BACKGROUND
I have tourettes syndrome - and was heavily medicated thru middle, and high school for it.
not currently on any meds, since completing high school.
born 1980
English decent
Male - 256 lbs
no family history of ANYTHING - except have one cousin on my dad's side with MS
Even in childhood, I have ALWAYS been stiff and sore when i wake up in the mornings, or when i have been sitting still for more than an hour or 2.. long car rides, sitting at a desk, etc... never looked into it, because its all i knew - thought it was normal. didn't find out otherwise till i was 19 years old. everyone said im too young to have problems, so i didnt worry about it, and went on with life!
about 8 years ago, I was driving my car for a delivery service... without any explanation, and all at once, part of the right side of my face, pinky, and ring finger on right hand, and my tongue went numb.
I went to the ER, they did lots of tests, found out nothing, and referred me to neurology....
they thought it was possibly MS, but cound'nt be sure.. so said wait and see what happens.
3 years after that, I was working as a satellite TV installer, and got a 120v electric shock from one hand to the other, right across the chest..... instantly the partial numbness was in both hands, and arms - had headache, chest pain, and felt really weak... ER couldnt find anything
the next morning, I tried to get out of bed, and fell on my face... I couldnt walk! it took me a few hours, but i managed to get up, and move around... from that point on, I have always have had to give concious thought to walking, and moving around. If i forget that im holding onto something, ill drop it.. when i try to answer the phone, i throw it behind my head.. because im not holding it tight enough. I was EXTREMELY sensitive to cold, and anything that had any vibration. (electric razor, lawnmower.. cellpone on vibrate mode) I had to put on gloves to grab anything from the fridge! the cold causes INSTANT shooting pain in whichever arm i tried to pick something up with.
my hands and arms wern't pins and needles numb, but like someone had turned down the sensitivity... WAY down. unless I give things conscious thought, I forget where my limbs are, and i have difficulty walking.
also, somewhere around this time frame, when i lie down, both arms started to go totally pins and needles numb.
it wakes me up at night... also my arms feel like they are in blood-pressure cuffs when im standing up.
the only comfortable position, is sitting slightly reclined in a soft chair.
this time, the neurologist did EVERYTHING - EMG, MRI's extensive blood work, checked for heavy metal levels..
other than slightly elevated arsenic levels ( I live in NW usa), everything was totally normal.
once again, i was told to wait, and see what happens.
this was about 3-4 years ago.
Now I am 31 years old, and for the most part healthy - I dont smoke, or drink, or use drugs of any kind....
but these problems i have been having keep slowly getting worse. last summer, my lower back, and back of my legs started feeling weird... then numb... it came and went for a few months....
at that time, I was working in law enforcement - running around with 35 lbs of gear on, VERY physical activity.
finally, it got to the point where i was not able to stand up for more than 30 min at a time.. then 20 min.... now I cant stand for more than 3-4 minutes without my lower back, and legs going numb, and then im unable to stand or walk.
I started using an electric wheelchair to do my shopping, and for other occasions that required me to be on my feet for any period of time. I only use the chair maybe 20% of the time - i dont want to become reliant on it!
i went to a chiropractor - anytime they preformed adjustments, i had weird tingling sensations in both my arms..
and also, i went bowling a few times, and EVERY TIME i did - things seemed to get worse... and stay that way!
sometimes my back will pop, and it causes the weird sensations that travel my arms as well...
every couple of months, things suddenly feel different.. like my perception of the sense of touch... when this happens, i find myself wandering around, feeling everything in the house to try and get a grasp of whats going on. things are always changing!
I referred myself to a spine specialist.
she kept saying there couldnt be anything wrong with me - im too young! and using a wheelchair is bad! i convinced her to do a FULL cervical spine MRI..
LO AND BEHOLD.. i have wedged vertebrae!!, and bone degeration from them rubbing together! and nodules and some other stuff.. shoemans/kiposis disease or something.... (I know i spelled it wrong) essentially i was born with oddly shaped vertebrae.
I was so happy to find something!!! after so many years!!! but now everyones telling me, that these issues, dont have any effect on tingling or numbness... they sent me to physical therapy.. it made things worse...
how can these results mean nothing??? i can see a deep inward cuve to my spine when im standing, and trying to stand up really straight hurts like hell!!
also, I i stand up and sit down too many times within a few minutes, things get really painful, and i get short of breathe.. its like im in shock or something, and hard to breathe, feels like i jumped into a cold lake, from a hot tub...(to explain the shortness of breath) - so i make sure i dont do more than 2 or 3 sit-to-stands in a half hour window.
today(9/19/2011) i had an EMG (first in 3 years) tested my right arm, leg, and foot. during the test, my leg felt weird and my hand as well... gotta love needles and electricity... but i was unable to move my foot, or lower right leg!!! its like it was paralysis or something!.. i had to have help getting dressed... and help getting back into my wheelchair!.
BOTH neurologists in the room insisted that the test couldn't have caused anything like this!! and then they got up and left!!
on the way out they said "well if it doesn't get better you can goto the ER" I was flabbergasted! they didnt care! or maybe they thought i was making it up>? i dunno.. sometimes i feel like this is all in my head, but then i trip on something, and fall on my face, and realize its VERY REAL.
the last times ive had EMG's - i find it very hard to use the limb that they tested for a few hours.... i try to move, and things just respond very slowly... is this normal?
MRI scans also make me VERY disoriented... the effects of an MRI usually last 4-5 hours, and i cant drive afterwards, or walk at all. and i can barley speak... it takes a lot of work to get thoughts formed into words.
back to today.....
after about 2 hours, i regained control of my right foot, and leg... its VERY stiff and sore now.
continued in next post...........
Wow - welcome back. Too young? You look so good? Normally we are told we are too old for MS. I am not familiar with anything else in that area but I am sure there are plenty of good specialists out there. Perhaps someoneelse here can add a name or two for you. Just don't give up on looking for answers - it's your body.
I am sorry that appt went poorly.
-L
I am sorry that appt went poorly.
-L
yea... I've been to OHSU.. but they have kinda dismissed me as "being to young and healthy looking to have any problems"
the neurologist i went to see there, I could tell the moment I met him, that he had already decided there was "nothing wrong with me" he was argumentative, and ignored test results that showed obvious problems.. im kinda at a loss of where to go now...
the neurologist i went to see there, I could tell the moment I met him, that he had already decided there was "nothing wrong with me" he was argumentative, and ignored test results that showed obvious problems.. im kinda at a loss of where to go now...
Dan, welcome and sorry you are going through all these problems. It sounds neurological to me, but then I am no medical expert.
If I were you, I would find a university that has a medical school and get connected with their neurology clinic. The suggestion for the MS center at OHSU is also a good one - I hear very good things about their work and treaatment of patients.
Prepare a time line of what has happened to you, don't mention that you have been on the internet (that will get you dismissed as a symptom shopper), and be prepared to spend more time with the docs. Don't be surprised if someone suggests that you have a psychological evaluation - it probably wouldn't be a bad idea to get that done and the question of psychosomatic illness off the table. It is common around here for people to be told it's in their head and having to prove otherwise.
You know your body, you know what you are experiencing is not right. Don't let anyone tell you differently and don't give up looking for answers. No one else is going to do it for you.
I hope we will see you around with more questions and ideas.
be well,
Lulu
If I were you, I would find a university that has a medical school and get connected with their neurology clinic. The suggestion for the MS center at OHSU is also a good one - I hear very good things about their work and treaatment of patients.
Prepare a time line of what has happened to you, don't mention that you have been on the internet (that will get you dismissed as a symptom shopper), and be prepared to spend more time with the docs. Don't be surprised if someone suggests that you have a psychological evaluation - it probably wouldn't be a bad idea to get that done and the question of psychosomatic illness off the table. It is common around here for people to be told it's in their head and having to prove otherwise.
You know your body, you know what you are experiencing is not right. Don't let anyone tell you differently and don't give up looking for answers. No one else is going to do it for you.
I hope we will see you around with more questions and ideas.
be well,
Lulu
Whatever you do DON'T go to Dr. North at Emanuel!!! She doesn't have a bed side manner and talks down to patients. Not to mention miss diagnosed me!
any resources or good ways to find a new doctor in my area? (NW Oregon)
thanks!
thanks!
yea its not always that I have the loss of awareness of limbs... its when im lying down, or at other random times... fees like my hands, or arms are facing a different direction, or in a different spot than they actually are..... usually only my arms and / or hands have this issue...
Autotopagnosia is an inability to locate parts of their own body/a lack of awareness of a part of the body. Autotopagnosia is usually due to a lesion in the non dominant parietal lobe or damage to the posterior thalamic radiations (connect the thalamus with the cortex). Generalized brain damage can present with similar symptoms of autotopagnosia.
you need some new doctors for sure.
any MS specialists in your area? or a close area? I had to go 2 states away to find mine........
MS is a long process sometimes, it involves ruling out many other possibilities. That calls for a good and dedicated doctor and a "pushy" patient at times.
Good luck and keep us posted, welcome to our forum, I think you will find it interesting, even if you are just lurking.
any MS specialists in your area? or a close area? I had to go 2 states away to find mine........
MS is a long process sometimes, it involves ruling out many other possibilities. That calls for a good and dedicated doctor and a "pushy" patient at times.
Good luck and keep us posted, welcome to our forum, I think you will find it interesting, even if you are just lurking.
... continued from 1st post
SUMMARY
Here are my current symptoms.
Spasticity - i feel like im fighting my own muscles... and im abnormally strong for someone who doesn't really work out!
I see brief flashes of light sometimes whenn im moving around...
feels like someones poking me with a sharp object in the face, and scalp.. it makes me jump! - used to only be when i was really tired - but happens anytime now, at random
overall pain in my face, when i get really tired
Jerking and twitching muscles - face, arms, legs
Spasms, Cramps arms and legs
Loss of awareness of location of body parts
Cognitive difficulties - some days i feel like my brain just wont work!!
Fatigue
Cold Sensitivity - increased Spasticity and shooting pain
Heat sensitivity - if i stay in shower too long, hands and feet start to itch really bad
when i lie down both arms and hands go totally numb....
and i cant walk very well... I can still get around.. but i look weird, and it takes some concentration...but i cant be on my feet too long... pretty much, I can do anything on my feet, in a short window.
********************************
I really keep a positive attitude with all of this - and i think people mistake that for me not really having any major problems... its my coping mechanism... ive lost my career, my house, and all my money(freaking medical bills) because of whatevers going on.... - trust me, there's something up! just dont know what! and people don't seem to take me seriously!
so there ya go!!! any thoughts???
thanks for any input!!
SUMMARY
Here are my current symptoms.
Spasticity - i feel like im fighting my own muscles... and im abnormally strong for someone who doesn't really work out!
I see brief flashes of light sometimes whenn im moving around...
feels like someones poking me with a sharp object in the face, and scalp.. it makes me jump! - used to only be when i was really tired - but happens anytime now, at random
overall pain in my face, when i get really tired
Jerking and twitching muscles - face, arms, legs
Spasms, Cramps arms and legs
Loss of awareness of location of body parts
Cognitive difficulties - some days i feel like my brain just wont work!!
Fatigue
Cold Sensitivity - increased Spasticity and shooting pain
Heat sensitivity - if i stay in shower too long, hands and feet start to itch really bad
when i lie down both arms and hands go totally numb....
and i cant walk very well... I can still get around.. but i look weird, and it takes some concentration...but i cant be on my feet too long... pretty much, I can do anything on my feet, in a short window.
********************************
I really keep a positive attitude with all of this - and i think people mistake that for me not really having any major problems... its my coping mechanism... ive lost my career, my house, and all my money(freaking medical bills) because of whatevers going on.... - trust me, there's something up! just dont know what! and people don't seem to take me seriously!
so there ya go!!! any thoughts???
thanks for any input!!
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