Doc Says He Thinks Its Pls

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Zaphoon

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Well, brain, cervical and thorasic MRI's were all unremarkable aside from normal degeneration for age. The good doctor said that clinically, it seems I have PLS. Another appointment is set for the 2nd week in March to check on progression and anything new that may pop up.

So, I guess for now, the ddiagnosed is PLS.

Zaphoon
 

crystalkk

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Kim,

I hope it stays PLS or maybe that pinched nerve will pop-up.
 

sukilou

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Zaphoon, Well, I guess there's some relief in having a possible DX. I'm hoping that if the PLS diagnosed sticks, your progression is slow. Was this from a VA doc? And does PLS qualify you for a service connected disability?
 

GGKK

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What is the difference between ALS and PLS?

Zaphoon, all the best for you!
 

Jules45

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Zaphoon, how did he come up with the PLS diagnosis?

What other tests did you have that were abnormal and what are your symptoms?

God Bless.
 

Zaphoon

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Lonna,

Yes, the VA doc had all the records and data from the 2 previous neuros. After this latest MRI, he's pretty much holding to a clinical evaluation of PLS. MS kind of flew out the window with these latest results. The disability question will come up at my next VA appointment.

GGKK,
The difference between ALS and PLS is lower motor neuron activity. ALS involves both upper motor neurons (located in the brain) and lower motor neurons (located in the brain stem). PLS involves only upper motor neurons. With PLS, you have no muscle atrophy and supposedly, no twitching. I have twitching but it is not due to LMN activity (clean EMG's back in June & July).

PLS can debilitate you but is not classified as a terminal illness, like ALS.
 

Zaphoon

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Jules45,

PLS is clinically diagnosed after a lot of other things have been ruled out. With PLS, your reflexes are hyper and you have a lot of spasticity and cramping. Limbs feel weak but there is no atrophy. The only real confirmation of PLS is accomplished via post mortem examination. I'm not ready for that one yet.

Some of my latest blood work showed slightly elevated cpk and sed rates but the give-aways that something was amiss was a combination of hyper reflexes, babinski sign, spasticity and continual cramping.
There was also the order in which limbs had been affected.

I'm in hopes that there is still a pinched nerve lurking in the bushes waiting to be found.
 
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lovelily

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Hey Kim~Sorry that you have a possible diagnoses of 'PLS'. I hope you can keep it that way.

I wanted to ask you a question about the weakness. Is it measurable by doctors, or subjective?

I definitely don't want to see you on any episodes of Doctor 'G'. Hang in there!
 

planningguy

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Zaphoon,

Like the others, bummer that this may be PLS, but hoping that's what it remains at the end of the day. It must be weird after sitting in limboland for so long to sail into a diagnosed.

Are you planning on having this neuro compare/confer with the other specialists you've seen?

Take care,

Robert
 

awieleba

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Kim~

I too am sorry for the pls diagnosed and hope that it stays that way. I pray that you have all the strength that you need physically and mentally for this, I am sure from what I know (little that I know) that you will have that strength.

My thoughts are with you and take care!

april
 

jennibf

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It continues to amaze me that we have such similar symptoms. The cramps and spasticity have gotten tons worse for me lately but my legs only "cave" after a lot of walking. My neuro mentioned that he thought it could be PLS before sending me to the Neuromuscular doctor if you remember.

What is the typical progression of PLS? Does it plateau? I know they have to continually follow you to double check for ALS from what I understand.
 

Zaphoon

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I appreciate your thoughts and kind words, my friends.

Lovelily, when I was on the phone with the doc earlier today, he mentioned that my legs were weaker than my arms which is why he was hoping for something to show on the thorasic MRI but alas, unremarkable except for the usual age related degeneration.

As for as progression, if it is limb onset, I can't remember the typical path. It does sort of a criss/cross up and down kind of thing. With me, its a question of if whether or not it started in my right shoulder or left leg. Both legs and shoulders are in the mix now.

My upper back muscles are tight and crampy as I type this.

I did walk a couple of miles today (wife had the car and I needed to make a deposit in the bank so, I walked). We'll see how bad my legs feel in the days to come from the exercise today.
 

jennibf

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More similarities, my right shoulder/upper back and neck are very tight. My left leg is the "bad one" from hip down.
 

Zaphoon

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Jennifer,

Have your doctors ruled out PLS?

I am going to try and keep my doctor looking for something else. At this point, I know there has to be a lot that has been ruled out in my case. Come on guys, look a little harder for the hiding pinched nerve!

It is sort of weird having PLS as a ddiagnosed with fasciculations. It would be scaring the hell out of me if I didn't already have 2 clean EMG's this summer.
 

jennibf

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No, they haven't ruled it out :( As a matter of fact, I really think my neuro is leaning toward it or MS but I have to have some lesions for MS and right now all I have is the symptoms and the pineal cyst on my brain that is too small to cause these symptoms according to the doctors.

I will know a lot more a week from tomorrow I HOPE.

The fascics annoy me and bother me although the pain and weakness is far worse than twitching. I spend far too much time with heating pads on my hip, leg, neck and upper back.

I am scared still....again....this is NOT going away. I have almost fallen numerous times, totally unprepared, without warning.

I read these things about people not finding out for years and it is just so frustrating.
 
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