PALS Diagnosed

[CindyRN]

Hello...thought I would introduce myself. I have been reading this forum for several months and have learned so much from you all. I am 46, my symptoms started with left hand thenar atrophy. So I went to an ortho and he said basal joint arthritis so I never thought anymore about it. Then...one day at work I was running to a code and pulled my left calf muscle which never healed and turned into foot drop.

Had first EMG in October which I was diagnosed with mixed motor/axonal demyelinating polyneuropathy. Had to switch Neurologist in January since first one was not covered by my insurance. Second EMG...diagnosed with probable ALS or Multiple Radiculopathies. I have been unable to make it to an ALS clinic...waiting on Medicare. Thank goodness SSDI and VA came through rather quickly.

I do have 2 questions which I am curious about....

1. Regarding pain....has anyone experienced terrible thoracic pain?

2. Atrophy progression...is it usually in a uniform progression such as distal to proximal? Mine is patchy and missed my right calf all together. Possibly because I have a partial conduction block in that calf? With my left and right hands....they are atrophied then jumps to my shoulders. just curious?

Thanks for any input!

Cindy

[glupavomomiche]

Hi Cindy, welcome to the forum that no one should ever have to be a member of, but glad you're here anyways! Wish we were meeting under better circumstances!

As for thoracic pain, nope, haven't had any in that area really. Just horrible shoulder, hand, hip, and knee pain.

The atrophy on me is pretty spotty as well. I'm not sure why that is. My only guess is that you have to consider that some areas have multiple innervations (is that even a medical term? I have no idea how to say that an area is sometimes served by several nerves) and even though one nerve might "go out" it might still be getting signal from elsewhere, so maybe that accounts for spotty atrophy. Just a thought... not a doc tor or medical professional, so that's just me trying to apply my geologist/musician hat to an area I know little about!

[CindyRN]

Thanks Sarah! I just realized I posted on the PLS side....still learning my way around.

[ottawa girl]

Hello Cindy and welcome aboard - sorry for meeting you here.

I am VERY new at this site and new to ALS. The little I know - I learned here. Initially I had no pain to speak of - just spastic fingers in left hand and twitches. In the last few weeks I've had horrible cramps - like huge knots. The first under my foot. The second memorable cramp was left calf - which required a cane for walking for one day. Now the cramps move around (left side)- for the last 3 days, it's in my upper left shoulder blade. I might add these episodes are not long lasting (just a few hours) but at times they really take the wind out of my sails. I am grateful to be mobile (with rubbery legs sometimes) - but I hate the fatigue. My left hand & forearm are still working but clearly bony with loss of muscle - so any small bumps or squeezes really smart. The heating pad is my friend. I have shortness of breath - but usually after eating or when over tired. Use an inhaler. Seeing my GP for that next week and my second visit to neuro is in August when I hope to get more information about my situation.

The best advice I got was from this forum ( from either Ted or Sadiemae) recommending a youtube 3 part ALS presentation called ABC's of ALS. I learned a lot - but of course I have no medical background like you have.

[CindyRN]

Hi Elaine,

What is weird is that I do not have cramps, maybe a finger spasm every now and then. No clonus or spasticity...I guess it will come along in time. But I figured over a year, should have some of that. My only upper is brisk reflexes but I have had those all my life so nothing new there. Rubbery legs for sure! The AFO sure helps alot.

Cindy

[sadiemae]

Here are the videos.

Director of research at the Forbes Norris ALS Center - Video

[CindyRN]

Thanks Sadiemae! I will watch it soon. I lived in Reno for 10 years, nice place! I worked at Washoe Care Center and Washoe Med.

[sadiemae]

It's called Renown now!

[Miss]

If you have any VA questions, I would be glad to try and help. My husband was a Vet, and I am currently working with several families in their quest to get things done on a more timely basis!

[momap53]

Welcome Cindy!
I think Sarah gave a pretty good answer to question 2.
I'm having some upper back pain if I sit upright too long. (Trunk muscles are going) I really appreciate the tilt/recline position on my pwc these days.

[CindyRN]

Thanks Missy and Deb! Missy...I have already been approved by VA and am receiving benefits. They were very fast.

Deb...Thanks for the info on the trunk muscles...mine are probably giving out. My legs are very weak but still ambulatory with the AFO. I know I will need to look for a pwc soon.

[momap53]

VA will probably set you up with a good PWC. Do some research in our forum archives to see what features others are using to make sure they order everything you need. Many have had major delays getting their PWCs so order as soon as you can so you'll have it on hand before the need is critical. It really helped me with some of the fatigue. I made good use of a rollator with a seat for many months before the PWC. Great for carting stuff through the house and I had a place to sit to open the door to the fridge once that activity started to throw me off balance or just to rest when I needed a break mid activity.

[CindyRN]

Thanks Deb! Great advice! I better look into it.

[sadiemae]

The people in the prosthetics department will be your best friend, or worst enemy.

Next time you go to the VA, stop by there department, introduce yourself, and take them some treats.

[CindyRN]

Thanks Sadiemae! I actually need to check out the ALSA chapter here in Montana, have not done that yet.