I have tourettes syndrome - and was heavily medicated thru middle, and high school for it.
not currently on any meds, since completing high school.
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.
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!!
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!
I think you have a severe case and maybe it is affecting your organs. Maybe something else is also going on, like something with your adrenal glands or something.
yea - actually they have been thinking that it might be MS from the beginning - but they usually dont follow up... they did an MRI right at the beginning, with negative result, and I just had one 3 weeks ago - also said its a negative result... my doc says.. well i GUESS it could be MS... then thats all i get.. are there any other tests?
I have a cousin on my dad's side that has MS, and he has a lot of similar symptoms... maybe i should go see his doctor ..
all of mine just keep saying that im too young to have any problems.. and I am supposedly going to the best Hospital/School in the area!! (OHSU)
any Doctors anyone can recommend in the Portland, OR Area?
Dan, you should post in the multiple sclerosis forum here on medhelp. There are a lot of wonderful people there--diagnosed and undiagnosed.
Yes, there are tests other than the MRI. MS may or may not show up on an MRI (although most neurologists either do not know or refuse to accept that). They should have done a lumbar puncture (spinal tap), evoked potentials, and bloodwork.
You are not too young. People in their 20s and 30s are at the prime age for developing MS. If your doctors are saying that, they do not have even the most basic information about this disease.
I am not saying you definitely have MS, but it absolutely should not be discounted.
ive finally gotten a referral to another neurology clinic here in town.. going in to see them in about a week.
hopefully they find something!!
new symptoms keep appearing!!
ive had sensitivity / tingling / numbness issues in my legs for year or so now, but a few days ago, that changed to now include EVERYTHING below the belt line...including the "bathing suit area" and its really got me freaked out!!
i really need to find a support group around here or something... mentally ive had about all I can take!
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