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billybob

Active member
Joined
Jan 18, 2016
Messages
32
Reason
PALS
Diagnosis
09/2017
Country
US
State
FL
City
The Villages
Hello. I am new to this forum.I am male, age 66. In May 2014 while at our home in Ohio, I discovered I could not start going up a ladder with my left leg no matter how hard I tried. Prior to that, I sort of "pulled" a muscle in that leg simply slow-dancing with my wife :). Then I started having a difficult time going up steps, so I went to a chiropractor that month and he took an x-ray of my back and referred me to a neurologist.

I visited UC Health Center in Cincinnati in July 2014 and went through a field test and a lot of blood tests. Blood tests were normal but strength was diminished in my left leg and foot. I had an MRI of spine and that was normal. The neuro gave me an EMG which he said was normal, so he thought I had Parkinson's and gave me Sinemet. I was on that drug for two months but things got worse with cramps and twitches.

In September I was at our other home in Florida and was referred to the Mayo Clinic in Jacksonville. Since my initial visit in September of 2014, I have been there seven times including three EMGs. At the first visit, the neurologist there immediately took me off Sinemet and said I did not have Parkinson's. The first EMG was abnormal: Abnormal study. There is evidence of a chronic, inactive left L5 radiculopathy. There is also a possible chronic, inactive left lower thoracic radiculopathy. There is insufficient evidence to support a disease of the lower motor neurons or their axons on
this study.
.

The next EMG was in June 2015 which there was no change. The 3rd EMG was in January 2016 following another field exam at which there were visible fasiculations and some new weakness in my left arm. Cramps are in my left calf, right calf and forearms. The 3rd EMG showed new changes: Abnormal study. There is electrophysiologic evidence of a mild sensorimotor peripheral neuropathy which was not present on the prior study in January of 2015. There were doublets observed in several muscles of uncertain clinical significance but can be seen in hyperventilation and metabolic disturbances..

To date, I have been diagnosed with "probable" PLS and the Mayo neuro will not rule out ALS and wants to watch me over the next few years. In the meantime I struggle with even the slightest exertion and my gait is bad and using a cane now. Has anyone else been through this same issue? Has it eventually progressed to ALS? Is it worth getting a 2nd opinion or is Mayo's ALS Center of Excellence the best there is?

Thanks in advance for reading my long message.

BillyBob
 
This was moved to the PLS subforum as this appears to be the working provisional diagnosis

Re another opinion Mayo JAX is very good. However if you do not have 2 neuromuscular opinions that agree another opinion is probably wise
 
Hey BillyBob, welcome aboard the slow train ('Slow Train Coming' - Dylan) called the "PLS To Nowhere".

Your symptoms started out exactly as mine... my left leg. When I first came out of the service I worked for American Bridge out of Tampa... so heights were never a problem for me. But... about 2008 I found I was having difficulty with my left leg on a ladder (and other things). Now, when I am at the top of a flight of stairs looking down... sometimes gives me the willies. :)

I too had an abnormal study but still to this point it is not indicative of ALS. I too use a cane but I am being encouraged to use a walker. Nope! Not yet.

Yes, it is worth getting a second opinion. I don't use much terminology here but you may do some research on this... they are watching my hands and specifically between my thumb and first finger on both hands. (I'll check and see if you can receive private messaging yet.)

There are very knowledgeable folks here (from the ALS group too). I coined a phrase here a while back... "it is... what it is" and my favorite comes from the military but one word changed, "Improvise, Adapt and Accept". Changed "Overcome" with "Accept". PLS is progressive, sometimes it even plateaus but "Overcome" just don't work.

Anyway... welcome aboard.
 
Thanks, Clearwater AL. I'm now having new cramps in my forearms especially after only very minimal exertion. As you well know, it is very frustrating but I'm working on accepting it as is and understanding it will continue to present challenges. I will fight to not use a walker or wheelchair. I think the fight in us will help keep the wolves at bay much longer than if we just cave in to the darn affliction :mad:.
 
Sorry to hear about your case. The Mayo is a very good clinic to go to. It is unlikely you will do better at another ALS clinic. PLS is VERY rare and for the most part only ALS clinics see any significant number of PLS cases. It typically takes 4 years or so to differentiate ALS and PLS. If you need an aide don't fight it and take the risk of injuring yourself. Don't be stubborn, using a walker is preferable to breaking a hip.
 
I agree with Bill, a second opinion elsewhere would probably not waiver from that you are receiving from the Mayo ALS Clinic at Jacksonville. As I read your post, you may not have been at ease with the Mayo Neuro going with "watch you over the next few years" (your last paragraph). But... Bill's right.

Concerning the cane, if it eventually becomes hard to maintain stability with one... stability over rules a fall.

There's a common phrase in the PLS circle concerning daily activity, "Use it... or lose it." I like to add "Don't over use it though." My Neuro said it just a little different, "Use it, or lose it... sooner."

Do what you can still do as long as you can still do it. :)
 
Thanks, Clearwater. I'm going to stay the course with confidence in Mayo Clinic. My wife recently said "Billy, denial is not a river in Africa". Words of wisdom from she who knows me best. My grandkids innocently call me "Crampa" instead of Grandpa. All in fun and it makes me smile through it all. Onward we go - taking it as it comes.
 
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