Is this part of ALS? Pleaaase read!

[Filmmaker]

I have read many times that sensitive issues such as paresthesia are not part of ALS However, I've experienced a lot of burning pain as well as cold ice pain in my body, mostly in my back and legs (ut also in my sclap) which sound like nerves misfiring, do you get those too? S\In the beginning i rememer I had feeling like water pouring out of my muscles..
I also, sometimes have so eep muscle pain that it feels like bone pain, do you get that too?
Thank you very much as I am starting to think I'm a unique case...

 

[glupavomomiche]

Just because you have ALS doesn't mean that every little thing that happens to you is because of ALS. A lot of PALS, like me, also have other conditions that either happened before or after ALS. I remember reading others' posts here about sensory issues they have as well. I don't think it's all that uncommon. As for pain not being part of ALS, whoever said that was a MORON. I have HORRIBLE pain. Stretching and massage help to some degree, but having been a dancer who stretched thoroughly almost daily for my entire life, it's not relieving, it's just a normal day. And remember, EVERY case is unique. No two people experience ALS the same way... ever. We're snowflakes. Be sure to mention these things to your doctor and have them addressed if they are too terribly bothersome. There are many types of therapy and medications for a myriad of symptoms. And calm down... que cera cera. Whatever will be will be. Try to enjoy the ride, crazy as it may be!

 

[Ms. Pie]

I have nothing like that. What does your Neurologist say about it?

 

[Filmmaker]

My neuro does not undertsand why I get those sensations and thinks it's in my head, i'm proaly ****ed up ecause of ALS anyway so it may be normal I have weird paresthesia... I have tried every meication on earth to calm the nerve pain it just made me worse, I have very bad reactions to meds anyway...

 

[BLPhill]

The pain you are describing, "feels like it's in my bones" sounds like nerve pain to me. I described the very same pain to my neuro and she said it's nerve pain. If you won't take any med's then you will have to live with it is what she said to me. That pain stops me right in my tracks!

 

[wellington]

Hi Filmmaker

My heart goes out to you. I can sense your desperation. I don't have an ALS diagnosis. My neuro says I have a serious rare neurdegenerative disease though. I have hyper reflexes, clonus, spasms, various tremors, and clinical weakness in two limbs. I also have mind-blowing burning pain in my left leg and right arm, and a periodic 'buzzing' feeling which travels up and down my left hand side.

My neuro says it is partially nerve pain, and abberant nerve responses. This was so bad for so many months that it made sleep all but impossible. A small (300mg) dose of neurontin has mostly solved the sleep problem. AND my completely unorthodox cure for the day time leg pain is ... Wait for it ... Champagne! One glass and it goes away for a couple of hours. I figure champagne's better for me than painkillers! (I don't have any before 4pm and not every day.)

The other 'nerve pain' in my left torso is harder to deal with. I feel like its causing my muscles to spasm so hard that I'm having trouble breathing. One thing that I find helps a little here is - shapewear. I can't get it on and off myself (my arms are too weak) but squeezing my torso seems to control it a little.

So there you have my holistic remedies - champagne and shapewear! (with occasional Baclofen.)

 

[Filmmaker]

Thanks a lot wellington, i am willing definitely willing to try champagne and will do!