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 dx 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 bananas:eek:yuck!!!
must be an american thing:lol:
i like them just changing from green and still firm.:D

[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 dx 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 dx. 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

[Geo]

The reason for Rising from a sitting position problems are Hip and Pelvis muscles are either weak or Spastic so much that they do not work in a proper manner . If you can get down to the ground or floor ,but have a hard time getting back up this is it . If you can crawl to a wall or door or somthing to grab and pull up with the hands and arms . This is the issue Hip , Pelvis Muscles . I gave your Moderator a web site to go to to watch Videos ,But im geussing she has to check me out ,I might be a scammer . Geo such as life has come down to, You just cant trust anyone no a days .

[Zaphoon]

Geo,

Thanks for the info! Last summer my condition was worse. I couldn't lift my left leg when sitting in a chair. When I'd go to get in a car, I'd have to lift my left leg in. That problem has gone away but rising from a chair has been a continued problem.

Now its primarily my neck, lower back, hip and leg muscles that are stiff. My voice is back to getting hoarse again, too. I also think I've developed something akin to carpal tunnel in my right wrist. Its been a problem for a few months, now.

But I remain encouraged and am religiously eating a banana a day, drinking more water and exercising my arms/shoulders. I'll be good as new in no time!

Zaphoon

[hopingforcure]

KIm,
I think Spastic muscles can act exactly like Geo explained. And what you explain show's how it can move from area to area, it would also make sense for the voice changes you describe. I am a believer though, maybe eating like a MONKEY is the answer.....
that and zanaflex and we might have a symptom stopper.. (just Kidding of course)...

[Al]

Geo, we know you're not a scammer. You've been around too long and put too much helpful advice here for us to think that. Every link from a single post (which 95% of the time is spam) to members with hundreds of posts gets moderated. Sometimes it might take a bit of time for one of us to look at it depending on time of day or day of the week. We do the best we can.

AL.

[olly]

george is 100% correct as always,difficulty standing from a sitting position is to do with weakness in the hip girdle area.

kim/lydia.....i have exactly the same problems.
my hip girdle(takes from the lower waist into the thighs)is very weak also my shoulder girdle(shoulders into upper arms)which makes it hard to keep the arms lifted.
its muscle spasms that weaken the muscles that cause this.

my pt arranged for adaptions to come and fit chair raisers to one of my room armchairs.
these are metal braces that fit on the feet and make the chair higher,they can be ajusted .
high raised chairs can be expensive to buy,so if you can get these in the usa thats great.
your pt will be able to find out.

i can not sit on anything else other than my chair.
when i used to sit on the sofa not only was it very difficult getting up but it caused me so much pain around the hip girdle area,this was because there was not enough support.
my chair seat is firmer and does not cause this pain,so the firmer the seat the better support in these areas.

kim,i too am having weakness in my left wrist(my right has always been weak due to a bad break as a child)
my main issue at the moment is pain in the left fingers,twitching 24/7 in the palm of hand (that area has clearly sunk in)

george,good to hear from you buddy.
hope you all have a good weekend:D

[Zaphoon]

Caroline,

Thanks so much for your informative input! I find this whole thing with me absolutely amazing. Your condition is explained by having MND and mine is explained by me having a combination of frozen shoulder syndrome, possible BFCS, Tendonopathy and possible (my thought on this one) carpal tunnel - right hand/wrist.

It's also funny that I broke my left wrist as a kid and it has been impaired ever since.

I suppose some of thiis could be affecting my hip girdle, lower back and neck muscles.

Anyway, I continue to enjoy eating bananas, drinking water and stretching. I am on my way to wellness and will give a glad report when this all goes away. Then, the VA neuro will have to concede his dx of PLS and agree with the MDA clinic neuro.

This all makes me very happy!:D

Kim

[Geo]

You have to remmember that when your on a sofa it sinks down ,further making you go down more ,so when you go to get back up ,now your Spasticity or Weakness & balance issues cause more problems. At thispoint i scooch up to where my knees are bent to where my center of gravity is closer to where it should be ( at your crotch area ) learned this in Martial Arts learning to keep your center of gravity is not too hard just keep your head centered (dont lean out) .Now the Spasticity comes in ,you are now going to have to do a small lunge to get erect (standing) If your lucky when you lunge upward you wont go over when standing ,this is where the quad cane comes in . A hard chair is best in the long run . Then when dinning ,getting the chair in where it belongs and getting into it without falling over .Geo

[hopingforcure]

Geo know's that I did not delete his post he sent it to my e-mail and I could not open the link. If you still have it post it here. You sure got spastic figured out. You are a corker...

[Geo]

OOOOOOOOK i sent you the link ,now just click it or post it . Or i'll have to send my attack kitty to your house . Be good now . Geo

[Geo]

I forgot to add . If i can wake her up from her nap . which is forever . Geo

[Connie]

Totally funny, Zaphoon. I am very happy for your potentially good news.

[dhudgeon@comcast.net]

I hope it works out for you. I too, belive that my doctor has misdiagnosed me. My symptons are not consistent with the ones that I read about for PLS. Were there any particular medical tests given to you that help re-direct your medical care?

Thanks and again congratulations and I hope all works out well for you.

[Zaphoon]

Parts of me have improved (which is not supposed to happen with a MND). This is due in part to having frozen shoulders that have improved and spasticity that lightened up (still there - just milder). My hips remain the same - its always takes a bit to stand up straight from being seated. I look like an old man walking for the first few steps.

The local neuro that originally gave me a dx of PLS is all but ready to retract it because my progressive weakness has stopped.

I'm now getting cramping in my feet that I didn't have before and this burning sensation in my right big toe is more frequent than it use to be (comes on daily for a bit). This kind of burning sensation usually isn't associated with PLS, to my limitted knowledge.

As far as I know, I've been tested for all of the common disorders via blood work, MRI's and EMG/NCV. Some of those may be repeated soon, as its been a year since my last EMG/NCV.

I don't think I have PLS but I do think my shoulder problems are connected to my leg, hip and voice troubles.

Al, I'm tempted to try smoking that banana peel you referred to.

Zaphoon