skin/touch/soreness issues

[Mediasmart]

I was diagnosed last fall and aside from some speech/swallowing problems, atrophy, fasiculations, useless left hand and right arm, EMG +, falling some, and having trouble walking faster than a snail (did I mention lifting my legs?) and now inability to take a deep breath, I've got a couple more issues and would appreciate comments on them as I can't find much that lumps this into ALS...but as it is there, well.....

1. My lower left leg has atrophied noticably and the shin bone is now extremely sensitive to the touch..pain actually. I have some cramping there and my left ankle is of no value..etc. but am concerned about the sensitivity of the bone(s).

2. My skin is discoloring in that area as well..looks like a rash under the skin. It is very well expressed on the top of both feet but in my left leg it is from ankle half way up...all in the atrophied area.

3. And this is the crazy one, when I sleep I pull the covers up and if they touch my face, jaw particularly, lips etc. the discomfort (not pain..just an over riding discomfort) is horrible.

I'm not imagining this stuff. Opinions other than "egad you again" would be most welcome.

 

[pearshoot]

have the clinic check for neuropathy. I have it in both feet, red looking skin rash on top of feet, very sensitive.

 

[FSHolbrook]

My Neurologist suggested a teaspoon of French's Prepared Mustard a day to help with the cramping, a member of our ALS group suggested drinking tonic water the quinine in the water is supposed to help with cramping. I use both and it does seem to help

 

[Txgirl]

you mention not being able to take in a deep breath. I suggest getting started on a Trilogy non-invasive ventilator. It will help improve your breathing. The sooner you start on the ventilator, the better.

 

[Mediasmart]

I was mis-diagnosed for sleep apnea instead of this. I use it nightly