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Amyotrophic Lateral Sclerosis (ALS) Message Board


Amyotrophic Lateral Sclerosis (ALS) Board Index


Re: Please help
Sep 16, 2008
Thanks for responding.I went to the neuro a few wks back and told him I was having migratory pains in my body--shooting/pulsating pains that moved around. I also told him I am getting non stop muscle twitching. He did the basic in office exam, reflexes, strength etc....said I was fine.
I have had boat loads of tests -blood, mri, bone scan-all okay. This started out by such bad pains in my body. Now the twitching has been going on for a month and seems to be getting worse. I am very scared and have been in tears over this.

My GP suggested the nerve testing which I get tomorrow.

Does this sound like ALS? I am so scared.

I am sorry you went through this with your mom. My dad was dx with pc 3 months ago...he passed 3 wks ago. It was very difficult to see him in pain
Re: Please help
Sep 16, 2008
I'm so sorry about your dad. What is pc? My mom did not have any pain at all with her ALS, in fact , when she went to see the specialist, he told her that pain is usually not part of ALS, although some people with the disease have said that they have some pain as muscles begin to atrophy. They usually described this as an achiness, not harsh, shooting pains. If you are having a nerve test, that should help the doctors pinpoint your problem. After my mom had a more extensive nerve conduction test at the ALS specialist's clinic, that was when they were able to tell her with certainty that she did have ALS.
I have read a lot about ALS, and your symptoms don't sound like any that I've read about that were associated with ALS. Try not to worry.
Re: Please help
Oct 1, 2008
[QUOTE=k2626;3730304]Thanks for responding.I went to the neuro a few wks back and told him I was having migratory pains in my body--shooting/pulsating pains that moved around. I also told him I am getting non stop muscle twitching. He did the basic in office exam, reflexes, strength etc....said I was fine.
I have had boat loads of tests -blood, mri, bone scan-all okay. This started out by such bad pains in my body. Now the twitching has been going on for a month and seems to be getting worse. I am very scared and have been in tears over this.

My GP suggested the nerve testing which I get tomorrow.

Does this sound like ALS? I am so scared.

I am sorry you went through this with your mom. My dad was dx with pc 3 months ago...he passed 3 wks ago. It was very difficult to see him in pain[/QUOTE]

My husband died of ALS 8 years ago. His symptoms started with twitching in his back and then down both arms and before you know it, all over. He started to slur and sounded as though he was drunk (did not ever drink). He began to fall all the time and drop things. He was dx. ALS by both neuro's. His life span was only 18 months. My main concern was the constant twitching as it really did bother him and annoy him. It was hard for him to swallow food and started choking even on liquids. He was 37 when he was dx. with 2 children we share. I asked the dr. if it was genetic and he says he did not think so. He stated that if it was genetic that I would not be alive to see it come out in my family. I would assume there must be 2 types of genetics due to siblings, mom and dad passing it down to their children. There must be a genetic that skips several generations. The dr. did not do any testing on husband as he felt it was a waste of time and money. He did evaluate him by letting him squeeze his hands and examine his reflex along with other things by observing. I cannot tell you how bad I feel for anyone who has to endure this disease! The mind stays alert while the body steadily starts shutting down. I stayed with him the entire time and was his nurse/wife and would not have it any other way. We did have hospice that did help with baths and bringing meds out to him. He did have pain due to muscles slowly shutting down. He could not talk toward the end but I knew exactly what he wanted and needed just by looking in his eyes. I know many ppl that do not believe in medication but I promised him I would not let him feel pain. I promised him every wish he had since I love him so and I use that as a present tense since I still do love him even though he is gone. My husband never complained of pain until he was put in the hospital bed. That part was the hardest since we slept together every night so I moved my bed next to his. When he did complain of pain, I kept him out of it. His parents did not approve but they were of no help to us anyway. I only hope you push to find out if you have this disease as life is short. You need to prepare for the worst but pray for the best. I wish you all the luck in the world and if you ever need to talk, just hit me up and I will listen and help you in any kind of way. Stay strong and go to a specialist so you can find out to put your mind at ease. Peace, love and happiness to you!
Re: Please help
Nov 27, 2008
[FONT="Book Antiqua"][SIZE="4"][COLOR="Magenta"]I do agree with no pain at first with ALS (husband died 18 months after dx. of ALS). My husband did have pain midway through the disease. He had major charlie horse cramps and pain. The pain was not from being in bed bc I did get him up about 10 to 15 times a day. There was days that I got him up 20 times. The doctor did stress the importance of getting him up when he wanted to get up out of bed. I'm very sorry to hear about your mom. I think ALS is different in each person that gets the disease. I knew 1 man who had ALS that lived only 15 miles away from us. He was the same age as my husband (37) but lived a much longer life. His systoms were not the same as my husband. He did not have any twitching. I also knew a man the same age as my husband that lived 20 miles away in a different town. I did go visit him. He lived longer bc he did choose vent, feeding tube and breathing tube. My visit there was a shock! His wife worked while she had a nurse sit with him. I had a conversation with this man, (he typed on a computer with ez keys by foot). I learned that the nurse that his wife fired was the nurse they sent to our home. She never was alone with my husband THANK GOD! This man tells me that she abused him verbally and physically (on top of his head and other places his wife could not see). I sat there and cried with him. Needless to say, I did not allow that nurse back into my home. She only came out to deliver meds and do evalutions bc it was hospice. My experience with hospice here in MS. was not good. The nurse aids did a horrible job at bathing my husband! We had one good nurse and they moved her to a different family. I just got to the point to were I trusted very little ppl and did most of the work myself. You do this out of love for your mate. I hope all is going well in your life. My life is much better but ALS continues to be a nightmare at times. I have came so far with strength from the ALS chatroom that I cannot locate now and my higher power. If you would like to talk, just reply and I will listen and help in anyway that I can. Val[/COLOR][/SIZE][/FONT][QUOTE=karen 126;3730379]I'm so sorry about your dad. What is pc? My mom did not have any pain at all with her ALS, in fact , when she went to see the specialist, he told her that pain is usually not part of ALS, although some people with the disease have said that they have some pain as muscles begin to atrophy. They usually described this as an achiness, not harsh, shooting pains. If you are having a nerve test, that should help the doctors pinpoint your problem. After my mom had a more extensive nerve conduction test at the ALS specialist's clinic, that was when they were able to tell her with certainty that she did have ALS.
I have read a lot about ALS, and your symptoms don't sound like any that I've read about that were associated with ALS. Try not to worry.[/QUOTE]





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