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Isabella Harley

New member
Joined
Feb 6, 2009
Messages
8
Reason
DX UMND/PLS
Diagnosis
01/2000
Country
UK
State
Scotland
City
Glasgow
Hello Friends,
was back a neurologist yesterday, first time in 3 years. For a few months nowI have noticed a marked heaviness on my left hand side a a severe pain in the right hand base of my skull. Basically not doing so good, very fatigued. The doctor is not happy with PLS label as he feels it leaves too much room for mistakes. He asks me lots about my family history and now my children. Cutting a long story short I have to go again for a motor conduction test, MRI and EMG and I'm really scared! Does aNyone else out there who's found that one side has got markedly worse than the other? I dont understand why he wants to test again after so much time! I saked did he think it was ALS, he said he didn't know. Not what I wanted to hear.
Anyway thanks for reading this and any help would be most appreciated. Hope you're all doing as well as you can
Big Hugs
Isabella
 

sral

Distinguished member
Joined
Sep 15, 2007
Messages
289
Reason
Learn about ALS
Diagnosis
n/a
Country
CA
State
ontario
City
toronto
Sorry to hear that you're feeling down.

If you haven't been to the neurologist in 3 years, things must not be so bad. Your progression is slow regardless of what he is thinking. Over time, PLSers sometimes start showing some lower motor neuron signs. This doesn't change the fact that you have been okay enough over the past 3 years to be able to avoid a neurologist.

How long have you had PLS for? Have you had an EMG before? If it's been a few years since first symptom then this is a good sign. I know it's not easy, but try to stay calm.

I know how anxious I was when my mom went for her 2nd EMG 3 years after 1st symptom onset. It was not FUN!

By the way, my mom's right side is worse than her left. This alone shouldn't indicate a change from PLS to ALS.

Good Luck to you!
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
Isabella,

The doc is trying to tell me I have PLS. My right arm is weaker than my left and I think my left leg is weaker than my right. My distill muscles (hands, fingers, feet and toes) all seem to be alright but my extensor muscles in my arms and flexor muscles in my legs have gotten weaker.

I'm noticing facial muscles on my right side starting to get a bit weak and this is a bit bothersome.

I'm of the opinion that any rate of progression is too fast. Oh, I know that slow is preferred over fast. I'm not a complete idiot but NO progression is my preference.

I hate this stuff...

Oh, its sort of customary for folks diagnosed with PLS to have a neurology exam at least on a yearly basis with EMG/NCV included to monitor for lower motor neuron involvement. You've gone 3 years without this having been done and this could be one reason why the doc is wanting to get you in and have things checked out.
 
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