Switching to UMND/PLS

[bhg]

Wow, each neurologist has a different answer! During my first 3 and a half years, several neurologists said probable PLS. When I was sent to Clinic, that neurologist described it as a “slow progressing variant of ALS.” He didn’t like the term PLS, saying that all fell under ALS.

Now a year and half later, a neurologist, subbing in, referred to my PLS! At the next clinic, which was yesterday, I asked the neurologist, another substitute, about this. He is one who puts all under ALS. After I pushed the point, he checked me out and said “upper motor neuron dominant.”

So switched to UMND/PLS instead of ALS.

This is where I thought I should be, having read up on PLS on-line and all the old PLS threads here on the Forum.

Will keep following the ALS threads, though, since it is more active, and I’ve learned a lot there as well. Just glad to be where people are sharing.

Thanks,

Betty

 

[ShiftKicker]

Those with PLS diagnoses are absolutely welcome to contribute outside of the PLS subforum as well.

I am glad you have a little more clarity with regards to your diagnosis and are not left wondering any more.

~Fiona

 

[Clearwater AL]

Betty, next time you see (or call) your Neurologist.... ask for your current diagnostic code he/she is using on your records. That will let you know where you are. Then look it up on the code chart.

 

[bhg]

Good idea, Clearwater. That will be interesting.
Just learned that the Doc who will be taking over the Clinic is the one who said PLS! Will be seeing him at the next clinic.
Betty

 

[bhg]

Clearwater, I just called the clinic. The diagnostic Code is G12.21. I looked it up. It is the general number for “Amyotrophic lateral sclerosis” with the interesting statement “G12.21 is applicable to adult patients aged 15 - 124 years inclusive” !! 124 Years!!

My guess is that they put all the Clinic patients under that code. Will be interesting to bring up when chat with the doc. Thanks.

 

[Romeosc]

I was just diagnosed with ALS in November... excuse my ignorance, but how is PLS determined from ALS?

 

[lgelb]

Romeo, PLS is the "upper motor neuron damage-only" version of ALS. In regular ALS, both upper and lower motor neurons die. In a nutshell (these are not all the differences), atrophy and weakness are more hallmarks of ALS, stiffness and spasms with less weakness more indicative of PLS. People with PLS, which is much rarer than ALS, have fewer respiratory issues and so live longer. There are also differences in what the EMG shows.

 

[Romeosc]

Romeo, PLS is the "upper motor neuron damage-only" version of ALS. In regular ALS, both upper and lower motor neurons die. In a nutshell (these are not all the differences), atrophy and weakness are more hallmarks of ALS, stiffness and spasms with less weakness more indicative of PLS. People with PLS, which is much rarer than ALS, have fewer respiratory issues and so live longer. There are also differences in what the EMG shows.

Thanks for your response!will discuss with Dr. at next ALS clinic.

My main problem is balance and muscle strength in my inability to rise from sitting position when rear is below knees. I have a lift recline and I can walk (like a 2 year old with walker). My legs can hold me, I just am just very careful to not trip or fall! I can climb steps with railings. I register 85% on lung test (requirement for Radicava was 80%). (Is Radicava also for PLS) I tend to lean while sitting if not leaning back or on arm of chair.I know I am not as strong as before, but I am 285 pounds and still eat well and legs carry my weight!

When people see me seated, they thing nothing is wrong. Wife says same thing when she is giving me sponge bath while new roll-in shower is being completed.

I

 

[bhg]

Thanks, lgelb. That's a nice summary. After 5 years I'm still eating well, almost too well, and I ace all the breathing tests. It's in my legs with are UMN. I found it best described in a study, “Differentiation Between Primary Lateral Sclerosis and Amyotrophic Lateral Sclerosis,” published Feb 2007 in JAMA. Are we able to post pdf?
Betty

 

[Nikki J]

It is fine to post as long as they are open access. Anything that requires payment ( by you or the person who shared it 1 to 1 ) should not be posted due to copyright laws. You could in that case link the abstract

 

[bhg]

Found the instructions. Hopefully I've attached a convenient pdf of the 2007 Study.

 

[Clearwater AL]

bhg, May I point out... that was a 2007 finding 10 years ago. A lot of changes and updates have happened since then.

May I add, Romeosc... I've read your posts and you give to the long debate here of weakness versus failing. I'm gathering your situation is weakness first. That coming from reading that you can still climb stairs, walking and such. With your considerable weight situation any muscle failing, I'd guess, would would amplify inability far more than you currently suffer. Which is good. Again, which is good. Maybe i missed it... what was the determination diagnosis of your ALS? EMG, Bulbar - Truncal, upper limb?

I hope I am not taken wrong here.

I have long followed on another sub-Forum the discussion of ALS not being weakness but failure. Perceived or other wise.

Maybe your input will help.

 

[bhg]

Clearwater, what is the latest and how does it contradict this study? I've seen various studies, but this one was clear, to the point, and matches my personal experience.

It is not so much the label, but understanding my symptoms so I can better communicate and plan ahead.

 

[Clearwater AL]

bhg,

Ok, I found it. (For some reason the link you posted wasn't taking me to the study you were referring to.)

 

[Romeosc]

bhg, May I point out... that was a 2007 finding 10 years ago. A lot of changes and updates have happened since then.

May I add, Romeosc... I've read your posts and you give to the long debate here of weakness versus failing. I'm gathering your situation is weakness first. That coming from reading that you can still climb stairs, walking and such. With your considerable weight situation any muscle failing, I'd guess, would would amplify inability far more than you currently suffer. Which is good. Again, which is good. Maybe i missed it... what was the determination diagnosis of your ALS? EMG, Bulbar - Truncal, upper limb?

I hope I am not taken wrong here.

I have long followed on another sub-Forum the discussion of ALS not being weakness but failure. Perceived or other wise.

Maybe your input will help.

I was diagnosed at Mayo in MN in Nov
I am on Radicava, on 14 day break before 2nd round.

They tell me that conditions start in my hips. I broke foot after a fall last Jan. They thought my balance problems were due to the fact, I broke foot behind big toe. Bones healed and PT didn't improve me much. I was walking with a cane and progressed to walker by July. Neurologists thought is was NPH, but spinal tap draining 40 CC of fluid didn't improve function. We got clear EMG and nerve study in Aug. Only when we got to Mayo, that ALS was diagnosed!

Does Radacava help if it is PLS?