I Am Encouraged!

[Zaphoon]

My recent round of doctor visits have been encouraging, as has been my research into neurological testing techniques.

The doctor at the MDA clinic believes I have some kind of syndrome but doesn't seemed convinced (at all) that it is PLS. My upper motor neuron symptoms aren't strong enough for him to suspect it.

My shoulder issues seemed likely to be caused by double frozen shoulder syndrome, not anything neurological (despite muscle atrophy). Are we happy yet?

As far as my personal research goes, I came across an article written by a neurologist that shares the same name as the guy I'm seeing, who argues that too much credence is placed on Babinksi sign alone. His reasoning is that too many GP's and even neurologists don't administer the test properly and misread the signs.

He goes on to say the "Hoffman sign" is a better indicator of UMN damage. This was very encouraging to me because I do not elicit a Hoffman sign. I'm better already! Who needs a banana? I do!

Zaphoon

 

[crystalkk]

Zaphoon,

That's good news!

About the babinski sign - I have a mute response, it wasn't that way in the beginning.
But i also read that if you have weakness or damage in the peroneal nerve or cold feet it can cause that. (Which I do)

I have the hofffman, but I also read that 30% of normal people have it. I guess that leaves me out I'm not normal.....

How was the banana?

 

[Zaphoon]

Crystal,

Your post has encouraged me more! I've already learned that I'm probably naturally hyper reflexive (3,4+ throughout) and probably naturally show a Babinski as well. Now, if I should show a Hoffman later, its just par for the course of being naturally off a little. I could well fall into that 30% you mentioned. Oh, I'm just feeling better all of the time!

The bananas are always good! Green, yellow, brown - firm to mushy! They are all good to me. My wife likes to put the brown ones in the freezer to make banana bread from at a later date but I still call them good for eating as they are.

I am learning that what is abnormal for some is nothing out of the ordinary for others. Some of us have reflexes that are just a little naturally excited. Some of us have muscles that are just naturally stiff or spastic. So what if symptoms come and go - at least they went! Right?

Zaphoon

 

[crystalkk]

Zapoon,

That'a funny, I used to put the brown ones in the freezer and put them in my frozen banana daqueri's.

 

[Zaphoon]

Crystal,

You are just 3 posts away from becoming "A VERY HELPFUL MEMBER"!

Congratulations!

Zaphoon

 

[crystalkk]

Thanks, now it's two away.

 

[Al]

Hey you guys, no fair artificially boosting posts. LOL.

AL.

 

[olly]

good to know you are encouraged after your last appointment kim.
pls/umn desease is a clinical diagnosed made up from various signs and symptoms,these can differ in severity from person to person.
no one can be sure what each of our baseline for reflexes was before we got ill,therefor they are not always reliable.
but clonus/myoclonus is i would say the best visiable sign of umn desease.
spasms,loss of balance,stiffness, clonus/myoclonus,bulbar symptoms plus reflex signs with no logical cause on mri or other tests=pls(not pathologically proven till autopsy)

here is a bit about hoffmanns sign http://en.wikipedia.org/wiki/Hoffmann's_sign
crystal, i do have positive babinski but if my feet are cold(quite ofton) they will not respond at all so need a good rub and warm up.
i never had the hoffmanns test done on me,i suppose as it started in my legs it never occured for them to do it. but i did have the finger to nose tests and always fail

brown mushy bananasyuck!
must be an american thing:lol:
i like them just changing from green and still firm.

 

[BLPhill]

zaphoon,

I'm so happy for you. any kind of syndrome is better than pls/als.

 

[Geo]

OOOOOK How do you get to be prestigious OOOOH Depends on someone else HMMMMMM

 

[Just J]

Zaphoon, congrats! I hope you continue to receive encouraging news. As Betty said, anything is better than PLS/ALS. It is always good to hear positive news here.

 

[hopingforcure]

You guys are so silly.. He Geo are you still warm?(you Bugger), I have positive Hoffman's sign in both hand's. I agree with you Caroline Clonus is the real kicker if it is a UMN problem. Many people have hoffman's, and brisk reflexes naturally. But Clonus NOT SO MUCH.. I have sustained clonus which is worse, my anke's will go on until they are physically stopped.
Kim I am thinking you are looking less like a PLSer, or a very slight plser. Some people can have pls to a very slight degree. Like Caroline said can only be seen with an autopsy. Oh this stuff is such a slippery slope.. But I am glad we all have each other.

Congrats Crystal, you sure are a Helpful Member

 

[Zaphoon]

I agree that if this is PLS, it is pretty mild. My major complaints are cramping calf muscles and when I go from sitting to standing, my first few steps are in a hunched position because it takes me a bit to get to a full stand. Some muscles (in my side) just refuse to get to work right away. My gate is also wide and stiff when I first rise from sitting.

I'm back to getting hoarse again, too. This is an "on again - off again" condition that never fully leaves and is bugging me nutty.

Zaphoon

 

[lydia]

Hi Kim, you described perfectly how I walk right after rising from a seated position (a feat in itself). Yesterday my thoughtful son called me a penguin. My hamstrings are so tight and sore that the sensation has spread (embarrassed to describe to doctor) into the bottom of my butt cheeks (as if I was spanked or rode a bike for miles). My GP decided to send me to physical therapy. Bending down to empty the dryer ruins my balance and well-being for the rest of the day, I can't imagine what would happen if someone made me stretch. It is absolutely nauseating. In your search for diagnosed have you done the PT route, and if so did you note any improvement? I am avoiding it for the time being thinking it would just be a waste of time (convinced he ordered it just to appease me).

I am happy to hear there is doubt in the professional ranks regarding your PLS diagnosed. I say, hold out for something better!

Lydia

 

[Zaphoon]

Lydia,

I'm sorry to hear you are having such trouble. The only PT I'm doing at present is for my shoulders.

The VA neuro is still looking at this being PLS for the present and is having me follow-up with him on a quarterly basis. Next appointment is late June. I'm wondering why I have so much trouble rising from a sitting position and standing tall (I could have stated that question as follows: "I'm wondering why I have so much trouble rising and coming fully erect in a standing position." but that may have brought misunderstandings and odd responses.)

Smilies!

Zaphoon