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Amyotrophic Lateral Sclerosis (ALS) Message Board
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Old 09-12-2008, 12:20 PM   #1
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Please help

I have posted before and am very scared. For 3 months I have had migratory bone/joint pain, extreme joint cracking now I am getting little muscle twitches all over my body-from my bum, to arm, hand, thigh, chest....

I have had SO many blood tests, MRI of head and spine-all fine. I am so worried I have ALS. Please help

I am a 33 yr old female

 
Old 09-15-2008, 01:33 PM   #2
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Re: Please help

If you haven't already done so, I would go to see a neurologist. ALS is difficult to diagnose because it mimics many other conditions, but a neorologist would be able to determine if you have ALS or not. Please remember that ALS is a rare disease. Try not to worry in the meantime.

 
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Old 09-15-2008, 02:47 PM   #3
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Re: Please help

Thanks for your response. I am panicked and depressed-ALL other tests (and I have had a TON done) are clear. I am so sad right now.....

I saw 2 neuros but neither did testing aside from in office reflex tests.

 
Old 09-16-2008, 12:16 PM   #4
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Re: Please help

Did you specifically ask the neuros about ALS? DId they answer your questions as to why you may be feeling the way you are? My mother had ALS. When she first went to see a neurologist, it was because she was having slurred speech. He did a reflex test, closely observed her muscles, listened to her symptoms, and then did a short nerve conduction test. WHen he was finished at that first appointment, he said that he suspected ALS and then sent her to an ALS specialist. If your neuros did these things, then you probably have nothing to worry about unless your symptoms get worse. If you didn't have these tests, then you may have to insist on them for peace of mind.

 
Old 09-16-2008, 12:29 PM   #5
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Re: Please help

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

 
Old 09-16-2008, 01:43 PM   #6
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Re: Please help

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.

 
Old 09-16-2008, 02:09 PM   #7
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Re: Please help

Pancreatic cancer---they found it by mistake and he did not even last 3 months after dx, it was horrible. Many of my symptoms onset after my dads dx so maybe it is all related to stress and my pains etc are just manifesting the stress more. My dad was my only parent, and the only one I have ever known so I know it took a toll on me. As I am sure you know, seeing your parent get more and more ill is devasting. I think my dads pain in the end was due to atrophy, for example, rolling over in bed was very painful because it was mostly bone---is that the pain you are referring too?

Thanks for your sharing your information. I really have been depressed and convinced that I have ALS. It is good to hear that pain is not a symptom, pain is definately the first symptom I have had and the twitching is most recent. I just cant deal (nor can my family) with any illness right now....not like any time is a good time though of course.

 
Old 09-17-2008, 06:55 AM   #8
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Re: Please help

I think that it is very possible that all of the stress that you are going through has contributed to your symptoms, but it is still good to check it out. A few years ago , I had a bout of clinical depression. I was amazed at how the emotional stress of depression could manifest itself physically in my body. Hang in there.

 
Old 09-17-2008, 09:54 AM   #9
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Re: Please help

Thanks Karen, I go in today. The muscle twitching has gotten out of control-I just cant stop it, not even in my sleep when I wake up and feel it.

Thank you for your support.

 
Old 09-17-2008, 12:44 PM   #10
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Re: Please help

I just had to respond about stress. I know not much about ALS. But after my first daughter was born with Down Syndrome and a bad heart defect I went through a bad time. I was for sure I had some bad disease. I had back pain, muscle twitches, stomach problems and heart irregularties. I went to numerous doctors who kept telling me I was depressed but I didn't believe them because I thought I should be able to handle everything myself. I was sure it was some disease. I finally gave in and took the anti-depressant to prove them wrong. I was to the point where I couldn't sleep now. Well it was amazing how much better I got as time went by. I was like the previous poster and could not believe how this all manifested itself in physical symptoms. Definitely you have to have it all checked out by a doctor but know that it is possible to just be stress, anxiety, depression.

 
Old 09-17-2008, 01:18 PM   #11
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Re: Please help

thanks for sharing your story. What scares me is twitching is non stop and all over just dont know how stress can cause that. If my test comes back clear I will def see about this thanks again

 
Old 10-01-2008, 02:57 PM   #12
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Wink Re: Please help

Quote:
Originally Posted by k2626 View Post
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
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!

 
Old 10-01-2008, 03:20 PM   #13
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Re: Please help

I am so sorry to hear about your husband. I recently lost my father due to cancer so I know how hard it is to see a loved one fade in front of you.

I went in had a nerve/muscle test last week and the neuro said I was fine. I saw two other neuros before him that did not conduct tests.

Thanks again, and again I am so sorry for your loss....though it was 8 yrs ago I am sure it is very painful still.

 
Old 10-01-2008, 03:23 PM   #14
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Re: Please help

Val,
What a horribly sad story. I am so sorry for you and your children and for the suffering your husband endured. He was so young and I am assuming that he wasn't taking any statin medications for high cholesterol. The only reason I mention that is because there are reported linkages to ALS and statins. I wish you well and understand the sadness of losing your soulmate. I lost my husband almost 2 years ago to cancer, but he was about 20 years older than your husband. God bless.

 
Old 10-03-2008, 06:00 PM   #15
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Re: Please help

You are most welcome for me to share this story is hard but appears easier with ppl here. I hope your testing stays normal as you said the twitching is non stop. Maybe your body just had an episode of muscle spasms that continued for awhile. It's funny how the body does such strange things that scare us. I just went under gallbladder surgery that had two infections and stones plus internal hem. which they stapled back up and then packed with some kind of dissolving method. I read up on that hem. procedure which was not something I wanted done seeing how the outcome is not good later done the road they come back or it infects the body to a colostomy bag. Yuck! The gall bladder I would do again. The dr. said that the hem. were from lifting my husband out of the bed every day for as many times as he would get up. Many thanks to you both for ready my story and feel free to share with me at anytime. Hugs to you both!

 
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