caregiver0204
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right track
You are on the right track, find a new doctor.
You are on the right track, find a new doctor.
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Howdy
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Intense muscle pain
The Doctors that tell you that ALS doesn't give you pain don't know what they are talking abought. I had pain so bad in 2004 that I had to go to the Hospital to get a pain killer strong enough to stop the pain.
The Doctors that tell you that ALS doesn't give you pain don't know what they are talking abought. I had pain so bad in 2004 that I had to go to the Hospital to get a pain killer strong enough to stop the pain.
LittleHeart
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I have been reading my husband the post and he says he agrees with you Howdy.
Had to take him to ER last night for pain shot.He is having a better day though
thank goodness
Had to take him to ER last night for pain shot.He is having a better day though
thank goodness
kathmc
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muscle pain
Hi,
I haven't been able to check in on the forum for a while. Sorry this is not timely. I wonder why that Dr. thinks his pain is only in your husband's head. That sure relieves him of any responsiability to address a problem that is stressing, distressing and most likely solveable. Makes me want a MY DR. SUCKS site.
For the 5 years when I looking for a answer to the progessive weakness and falling, I was always adapting to keep doing the things I always did. Those adaptations resulted in uneven wear and tear on the left (rotator cuff included ) shoulder. The legs were weak and my arms gradually took over more and more for them. This was not clear for a few years. First it hurt for some motions. I reduced it's workload but it got worse. Finally froze solid. ( This means every muscle & tendon attachment in arm, shoulder and ribcage that doen't move as usual, starts locking in place. The longer the immobility, the harder it is to rehab..) Lots of pain no matter what. No position is comfortable. Easiest position was bent at elbow across chest or with hand near collar bone. Therapist said that was common, it protected the injury.
Two years of physical therapy and it is partly usable. 1/2 way through a P.T. person overcranked saying what progress we're making, ignoring my protest. No pain, no gain they said. That added the 2nd. year. Twenty years ago it only took 6 months to get my arm back. The joys of grtting older! Well, now the right shoulder is trying to join the left's retirement plan as it has been doing the work of two. More P.T. b4 it's totally locked up is my plan. A orthopedic Dr. gave me the prescription for physical therapy.
I had to race thru this. please excuse spelling, grammer, length. Have to go now. Good luck. If your fella doesn't fabricate stuff, I'd vote the Dr. off the island.
To better times and doctors,
Kathy
Hi,
I haven't been able to check in on the forum for a while. Sorry this is not timely. I wonder why that Dr. thinks his pain is only in your husband's head. That sure relieves him of any responsiability to address a problem that is stressing, distressing and most likely solveable. Makes me want a MY DR. SUCKS site.
For the 5 years when I looking for a answer to the progessive weakness and falling, I was always adapting to keep doing the things I always did. Those adaptations resulted in uneven wear and tear on the left (rotator cuff included ) shoulder. The legs were weak and my arms gradually took over more and more for them. This was not clear for a few years. First it hurt for some motions. I reduced it's workload but it got worse. Finally froze solid. ( This means every muscle & tendon attachment in arm, shoulder and ribcage that doen't move as usual, starts locking in place. The longer the immobility, the harder it is to rehab..) Lots of pain no matter what. No position is comfortable. Easiest position was bent at elbow across chest or with hand near collar bone. Therapist said that was common, it protected the injury.
Two years of physical therapy and it is partly usable. 1/2 way through a P.T. person overcranked saying what progress we're making, ignoring my protest. No pain, no gain they said. That added the 2nd. year. Twenty years ago it only took 6 months to get my arm back. The joys of grtting older! Well, now the right shoulder is trying to join the left's retirement plan as it has been doing the work of two. More P.T. b4 it's totally locked up is my plan. A orthopedic Dr. gave me the prescription for physical therapy.
I had to race thru this. please excuse spelling, grammer, length. Have to go now. Good luck. If your fella doesn't fabricate stuff, I'd vote the Dr. off the island.
To better times and doctors,
Kathy
Pain
When I was first told I had ALS 'they' said there would be no pain,,,,,ha! After a year now I wake up all knotted, my muscles so tight and severe pain. The ALS clinic says now it is common in "this" stage to have pain and put me on morphine. Don't let others tell you how 'you' should feel!
Suzanna
July 11/67
DX Aug.05
When I was first told I had ALS 'they' said there would be no pain,,,,,ha! After a year now I wake up all knotted, my muscles so tight and severe pain. The ALS clinic says now it is common in "this" stage to have pain and put me on morphine. Don't let others tell you how 'you' should feel!
Suzanna
July 11/67
DX Aug.05
LittleHeart
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I think reason he says its all in his head is because he doesnt specialize in ALS.
Seems like sometimes i know more about the disease than he does. But lately some things have been happening that im not sure is part of ALS.
Does anyone here have problems with passing out?He will be doing great then break out in a sweat from his kneck up and just go out.
These last anywhere from 10 minutes to few hours.When asked doc about it he says he has ALS. Thats only response i get.
Am hoping doc he is seeing later in week can shed some light on this.
Anyone who has simialar episodes who will respond would be very helpfuil
Thanks
LittleHeart:
Seems like sometimes i know more about the disease than he does. But lately some things have been happening that im not sure is part of ALS.
Does anyone here have problems with passing out?He will be doing great then break out in a sweat from his kneck up and just go out.
These last anywhere from 10 minutes to few hours.When asked doc about it he says he has ALS. Thats only response i get.
Am hoping doc he is seeing later in week can shed some light on this.
Anyone who has simialar episodes who will respond would be very helpfuil
Thanks
LittleHeart:
Al
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Don't let that quack tell you that it is part of ALS. I've never heard anyone here or any other forum talk of that happening. Maybe it does but it's a pretty obscure thing to happen. Too many doctors don't have a real clue about ALS and just tend to Write you Off. You're gonna die anyway so why worry. It sucks and they need a kick in the butt. Thank God you're seeing another doctor. Don't take any crap from any of them. Tell them you want him checked for stroke, decreased blood flow in the carotid artery, TIA's and any other thing that can cause these episodes. I'd bet my pension it's not caused by ALS.
LittleHeart said:I think reason he says its all in his head is because he doesnt specialize in ALS.
Seems like sometimes i know more about the disease than he does. But lately some things have been happening that im not sure is part of ALS.
Does anyone here have problems with passing out?He will be doing great then break out in a sweat from his kneck up and just go out.
These last anywhere from 10 minutes to few hours.When asked doc about it he says he has ALS. Thats only response i get.
Am hoping doc he is seeing later in week can shed some light on this.
Anyone who has simialar episodes who will respond would be very helpfuil
Thanks
LittleHeart:
One of my clients was rendered a quadriplegic after an auto accident. While in rehab, they had him using an abdominal binder. This served to hold in the stomach/abdomen when they lifted him out of bed or shifted him from one position to another. There had been several occasions when his blood pressure dropped and his eyed rolled back, either passing out or almost doing so, in the course of making these moves.
Perhaps your loved one is experiencing the same kind of problem. Immobility is immobility.
joelc
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LittleHeart,
I have been having the same sweats you are talking about, but not passing out.
I was told the sweats up this high are because my adrenal glands are shot.
Anyone have any experience with this?
Joel
I have been having the same sweats you are talking about, but not passing out.
I was told the sweats up this high are because my adrenal glands are shot.
Anyone have any experience with this?
Joel
LittleHeart
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Hello sorry havent read the post lately been hectic here.
Al you were right the passing out isnt from ALS the docter isnt sure what it is yet but is doing every test imaganable but says he has never heard of a case where this is part of ALS so hopefully we will have answers soon.
Al you were right the passing out isnt from ALS the docter isnt sure what it is yet but is doing every test imaganable but says he has never heard of a case where this is part of ALS so hopefully we will have answers soon.
braveheart
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- 32
Pain?
Hi all, I've been struggling with my right side getting weaker, the disease is getting more real for me. My anti.dep. med. has been changed and I feel better now. I went to my Dr. in the M.S./A.L.S. clinic about pain I've been having usually after 4 a.m. I wake up with intense pain in either my knee, shin or ankle. Only intense massage or walking relieved it, so he gave me a script. for Gabapentin and it works for me. He didn't explain why but it must have to do with the death process of the muscles, I am also having swelling in my feet that are a part of it.
NEWS FLASH! I got my braces off last week, just shy of 5 years and 6 mos.post-op. I am so happy to be rid of them :-D. My 13 yr old son and I are flying down to Indy to see my family since mom isn't doing well and they don't know about my braces being off, I want to surprise them with a big white smile!
Later, Sarah
Hi all, I've been struggling with my right side getting weaker, the disease is getting more real for me. My anti.dep. med. has been changed and I feel better now. I went to my Dr. in the M.S./A.L.S. clinic about pain I've been having usually after 4 a.m. I wake up with intense pain in either my knee, shin or ankle. Only intense massage or walking relieved it, so he gave me a script. for Gabapentin and it works for me. He didn't explain why but it must have to do with the death process of the muscles, I am also having swelling in my feet that are a part of it.
NEWS FLASH! I got my braces off last week, just shy of 5 years and 6 mos.post-op. I am so happy to be rid of them :-D. My 13 yr old son and I are flying down to Indy to see my family since mom isn't doing well and they don't know about my braces being off, I want to surprise them with a big white smile!
Later, Sarah
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