your thoughts.

[johnnyliverpool1]

from neuro consultant 5 years ago..just found it.....examining him, his reflexes were pathologiclly brisk in lower limbs with a crossed adductor reflex particularly on right side....i felt that that his planters were equivocal or upgoing.............he is unsteady on walkin heel to toe but has no other cerebellar signs and complains of pain walking and needs to sit down to relieve his pain.....he has some degenerative change in cervical spine but is not a surgical target.....my own feeling is he probably has got dgenerative change in the spine and this alone is accounting for his symptoms but i think it would be sensible to exclude any medical co morbid problem particularly inflamatory ...i have therefore requestd a b12, folate, ana, lupus anticoagulant, anticardiolipin antibodies as well as csf exam to look for obligoclonal bands..brain scan prior to the lumbar puncture test.....it is not felt to be periperal vascular desease....yours, consultant neuro....ps...no wonder a never had a cluewhat it was all about at the time....johnny

 

[AKmom]

looks like he is suspecting your degenerative disc desease to be the cause of your problems, but wants a full work up to be sure. Now out of all those tests, did anything come of it? Or are you still in limbo? Or is your ddd is what is ailing you?

 

[johnnyliverpool1]

ta akmon for asking....i had another 3 yrs in the system....i asked were in the spine the ddd was and they did not know, which set em off on what took another 2 yrs...apparently my spine is in good condition for my age....told i did not have a tumour . ms stroke but it was something in the spine.......no mention of mnd except i had the umn syndrome....and goodbye dont bother us no more...not true but near enough...got me yrs wrong took 6yrs in all.......thoughtsat all johnny

 

[AKmom]

well Johnny, docs can be a real pain! You know they don't know everything, thus why they call it "praciting medicine"...and we get to be the guinea pigs. But most of them wont tell you they don't know..instead they will give obscure diagnosis's and say there is nothing they can do about it. Or they will treat you (if there is a treatment) for said diagnosis, only to change it later when the meds don't work because thats not really what you have. They did that to me at least a dozen times. I figure I might as well just live with it once someone mentioned the pls and not persue any further. Too much money spent on trying to get a diagnosis and I would rather be spending it on traveling while I still can!

Johnny do you have babinsky reflexes? I am curious how they diagnos things. Seems like everyone is different in what they determine to be UMN and not...

 

[AKmom]

hmmm my message got sent to the mod squad. Not sure why.

 

[Zaphoon]

I know better to complain; I'm only on year #4. One doc says I have oligloconal bands and another says, "So what? That doesn't necessarily mean anything." Looks like we're kind of in the same boat.

 

[AKmom]

Me too Zaphoon. They found 2 oligloconal bands in my spin al tap and said it takes three to diag nose ms. Yet other places on the n e t say anything over 1 is considered pos itive. What can we do? Nothing.

 

[notgivnup]

I am right there with y"all,........... 4+ years since first symptoms, every other trearment and test in the book tried, 4 neuros later diagnosed Nov 3, 2010, A L S......there best guess?...I guess so! They cannot show me proof, like " see, there it is". They say "It's A L S when all else is ruled out".....I'm still wondering if.?.......But as they say "it is what it is ", no matter the name.

 

[johnnyliverpool1]

akmon....th bit were it said....planters were upgoing, refers to the babinski...i think..equivocal or upgoing, i dont quite grasp.....looking back, i had the spaz then, which for me is the main source of discomfort ...a secret socity these people sure are...johnny

 

[Zaphoon]

Johnny,
I think equivocal means that the result of the plantar stimulation (Babinski check) resulted in your toes going neither up or down. I've had them go up on one foot but neither up or down on the other. They called the latter one "equivocal".

 

[johnnyliverpool1]

so zaph....when he said, planters were ither equivocal or upgoing, he meant either no movement or up movement but no down movement....correct.......or am i just being thick, again.....cheers johnny..

 

[old dog]

I guess I'm lucky--got a diagnosis in three years. I think the two neuros and two primary care doctors I went through got tired of my questions and complaints and finally referred me to the University Teaching/Research Hospital in this state - OHSU. Prior to the referral, I had two MRIs of the head, two barium swallow tests, and a whole battery of blood and urine tests. The second neuro wanted me to have genetic testing, but it cost over $20,000 and was not covered by Medicare.

I have never had a spinal tap or an MRI of the spine. My diagnosis was based on EMG results which did not show any evidence of LMN involvement. Like AK Mom, I would have reservations about the accuracy of the diagnosis except PLS seems to be the only thing that fits. I have learned far more from this site than from information given to me by doctors. I agree with Johnny--it's a catch-all category.

 

[johnnyliverpool1]

apparently, upper motor syndrome is fairly common....pls is very rare.......all u want from yr neuros is straight talking...the group of neuros run me ragged for 6 yrs....then sent me off with a something in the spine....fair enough but there is a way to do it.....so am here cos my symptoms match pls to a tee.....but i know i aint got it cos i know i aint gonna win the lottery......am i........johnny...

 

[Toto's Dorothy]

Johnny,

Remember what you told me to do with that dollar? (Seriously, people!) You told me to keep it because I would never win. So unless you want to throw it away, I'll gladly take it off your hands.

 

[johnnyliverpool1]

toto....u can have a potatoe off my plate anytime.......and if i thought u would win al send u a dollar...in fact wat al do is buy u , with a good old british pound, a lottery ticket for this weekends draw...hows that..............the jackpot is only about 8,000,000 dollars in your currency,,,,but u could scrape by on that, could u not.......loves ya, johnny