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Old 07-20-2006, 07:26 PM   #1 (permalink)
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Default intense muscle pain?

I'm so confused. My husband may have ALS. He definitely has universal degeneration. We're waiting for the next five weeks to see what happens. This is my question. Five days ago, Dan started having trouble lifting up his left arm, and winces in pain when he uses it a certain way. We saw the neuro about it today. He said that he doesn't think that it's related. Does anyone have muscle pain? Is that part of ALS, or not. He didn't do anything to hurt it, and yet at the ATM yesterday, he had to hold his left arm with his right to push the buttons on the ATM machine. Thank you.

confused,
Erika

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Old 07-20-2006, 09:42 PM   #2 (permalink)
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From my experience with ALS, there is no severe muscle pain, just weakness.

I would suspect that what he is experiencing is outside ALS.

Wish you the best!
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Old 07-21-2006, 01:25 AM   #3 (permalink)
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Default why

why u waiting 5 wks?
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Old 07-21-2006, 01:37 AM   #4 (permalink)
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Erika Early on I had some intense pain but not much.Soreness more than anything else now. Bwk
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Old 07-21-2006, 02:10 AM   #5 (permalink)
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Cool Ok?

So your nero doesnt think u have ALS? why the worry? atrophy bring soreness then some ache then limitations..........but please dont jump to ALS untill evaluated by a "certified als clinic">>>>>>>>>>to many good other thoughts u can be having.....will pray
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Old 07-21-2006, 05:28 PM   #6 (permalink)
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Thanks all,

The neuro found mild to moderate nerve degeneration throughout his whole body. The Rheumatologist, who's treating Dan for his Rheumatoid Arthritis, consulted the neuro, and told him he felt that he had a bad reaction to Humira (RA drug), since he had a really bad reaction to it. The neuro said that if it wasn't from the Humira, then it would be some type of ALS. Now, the neuro wants to wait and see if he gets better or worse. In the meantime, he's not getting better. With this new arm pain and weakness, I don't know if it's related, because so many people tell us that ALS really isn't associated with sharp muscle pain. It's confusing. He is so tired, he can't even shower and brush his teeth without taking breaks. Does anyone have intense muscle pain in their arm when using it in a certain position?

Thank you,
Erika
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Old 07-22-2006, 01:39 PM   #7 (permalink)
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Question question

If he takes it easy and does not move much for 2 days does the muscle pain go away? (also do you do his stretching..he can not do this as he expends energy )
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Old 07-22-2006, 02:20 PM   #8 (permalink)
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with muscle loss you can end up with all sorts of associated pains...at times my husband has had intense shoulder pains when using arms, wrist pains, back pains....the muscle wasting puts stress on joints, tendons, and ligaments, plus folks may already have some pre-existing tweak that will be vulnerable once the muscles start going. Would need a PT or someone else knowledgeable to look at just what is causing the pain when he uses his hands. Hang in there....Beth
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Old 07-26-2006, 05:50 PM   #9 (permalink)
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Question muscle pain

I get muscle pain whenever using my arms or legs a lot. I have also developed a problem with my right knee, fluid on the knee and a bakers cyst behind the knee which is probably coming from weakness to the muscles around the knee. All my pain started in my lower back, back of neck, elbows, and has progressed to my arms and legs. Other than my muscle pain I have all the symptoms of als but doctors say I don't have it because of the pain. 2 and a half years for me with no diagnosis. I have never heard of als with extreme muscle pain. Have they checked his muscle enzymes yet ?

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Old 07-26-2006, 08:56 PM   #10 (permalink)
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Erica,

My husband has severe muscle pain in the same place as your husband. It is very painful. We asked if the als caused this kind of pain and some doctors tell us yes it does. They are sending a physiotherapist now to help with the arm and shoulder. I asked a woman that we met recently, her husband also had pain with als, she told me to that it was more common than was once thought. The treatment is helping my husband alot. An mri is something that maybe you should ask your doctor to do to see if there is a tear or fluid in the shoulder that could cause problems. Hope this helped a bit.

Sandy.
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Old 07-26-2006, 11:17 PM   #11 (permalink)
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Hello Erika,

I have been told that ALS isn't painful too,, but i do have some muscle pain. In fact it has been real bad in my left shoulder. But the doctor says he thinks it's an inflamed rotator cup. He gave me a shot of cortisone in it,, but it only lasted about 6 weeks. So was he right,,, ? Who knows.

Good luck,, and let us know how things progress.

Love and Prayers
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Old 07-27-2006, 11:45 AM   #12 (permalink)
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Post Muscle Pain

I have intense muscle pain, but it seems to be an after effect of the spasms going into charley horses.
When I have an esophagus spasm it feels like a heart attack. Talk about pain, out the door man.
This week I had an effect I have never had before, felt like I had been shot with a shotgun all over my body with probably 30 spots of muscle pain that lasted for 2 days. Freaked me out because I usually have a cramp in one or two muscles at a time, not all over. Maybe it was stress related or something. anyhow doing much better today. I have been taking Quinine, over the counter, recommended by my doctor for this. It had been about 2 days since I had a dose because I ran out . My wife got me some more yesterday and today I feel better. Might help? Who knows.
Can anyone elaborate on the B-12 shots helping with fatigue. I've never tried one but am about to go to the doc to see what he thinks.
Thanks
AL
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Old 07-27-2006, 01:15 PM   #13 (permalink)
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thanks all

The arm seems to be better now. Dr put him on nsaid. We got an earlier appointment to Mayo for this Wednesday. So happy, and scared. Thanks everyone. By the way, my husband called our primary, and wanted a b-12 shot, too. I'll be interested to know if that helps

greatful you're here,
Erika
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Old 07-28-2006, 07:00 PM   #14 (permalink)
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Default Pain

My husband diagnosed with ALS 2.5 years ago has severe pain and cramping, our Dr. states some experience pain and others don't. It is like everything else about this disease it affects everyone in it's own way. Have a great weekend.
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Old 07-31-2006, 10:48 AM   #15 (permalink)
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Hello everyone,
I am new here and this thread is asking one of the questions that i had.

My husband was diagnosed on March 8 2003 and from everything ive read
he is on of the luckier ones as he is still mobile.Has lost alot of weigh and muscle but
so far is still walking and caring for hisself.
He hurts in his left side and shoulder constantly,but docter has told us that
its all in his head because ALS doesnt hurt.Needless to say we are seeking the advice of new neurologist.
Im slowly learning about this horrible disease and the more i learn the more questions i seem to have.

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