als questions can you answer them

[Deborah Ann]

My husband has been recently diagnoised with ALS. He is 5o years old. He has pain? I thought if you have ALS you don't have pain? I'm confused! can anyone explain to me either yes there is pain or no there is no pain and maybe he was mis diogonoised? Possibly? Thanks Debbie his better half

 

[trfogey]

There can be pain with ALS. It's usually caused by severe muscle cramping and spasticity. If this is the type of pain your husband is having, his doctors can prescribe anti-spasmodic drugs such as Baclofen to ease those symptoms.

Pain from other causes -- injury, headaches, toothache, etc. -- happens in PALS just like it does in people without ALS. If the pain is serious enough, you should take your husband to a doctor or hospital, just as you would anyone else

 

[brooksea]

You will have to give us more info about the "pain."

 

[Miss]

My 50 year old husband is having pain, too. He has pain in his back from lack of movement and pain in his hips from his inability to move his legs. In the early days of the disease, he had pain from the cramping. He takes baclofen and oxycodone for relief.

 

[ScarlettK]

Hi, my sister is experiencing odd taste in foods that she once really enjoyed. She is attributing this to the ALS med Rilutek. Can anyone here relate to this? She is considering discontinuing the med because of this and nausea. Can she just stop taking the med immediately or should she wean off? Any help will be greatly appreciated!

 

[Al]

I think I was told to wean off it.

AL.

 

[Bad Balance]

I kinda remember now being told to wean off it too Al, but I just quit it cold. The side affects were bothering me. I may give it another go after my next clinic visit.

- Jerry

 

[michael0314]

My tastes have changed, and my ALS nuero told me, although it varies case to case, it is not uncommon. I am not on Ruletek, or Rulizole. I cant eat acidic. Tomatoes, most salad dressings, and most painful of all, good wine. lol It can be quit intense in some pals.
I have pain in my legs most days. Sort of a dull general ache. Not too bad but I have a perscription for Tramadol that I use on occasion.

 

[ScarlettK]

Thanks for all of the input. Sis had opted to discontinue the ALS medication. She was in contact with a nurse practioner from the ALS clinc who told her it was ok just to stop instead of weaning off. Her symptoms of nausea are gone now. I am sure that her taste buds will improve as well. My sis is very down the last few days. She is focusing on what she cannot do instead of what she CAN still do. I know her symptoms are progressing seemingly rapidly. She is telling me that before long she won't be able to walk. She says it is getting more difficult each week. She is very fatigued. She only was diagnosed about a month ago. Took bout 6 months of finally getting down to the nitty gritty with the diagnosis. She is still trying to cope. TY all here for your wonderful encouragement. It means more than you will ever know. Kaye

 

[Deborah Ann]

lower back pain like pulled muscle. He has also complained about the right cheek of his bottom hurting. Im sorry for not being on here sooner but its hard. we just found out and we are also trying to get everything in order. also we have 3 young kids.