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abg1116

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For the last 3 months I have had a somewhat constant twitch on my left side rib cage under my arm or the rotator cuff. At its worst the twitch will last for 30 seconds and is visable. At its best it is not visable. It does not hurt but my mom passed 10 years ago from ALS so it is worrisome. Any knowledgeable feedback would be so appreciated.
 

ottawa girl

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The absolute best advice I can give you is to go see your doctor.

Also, please keep in mind that ALS does not generally start with twitching.
 

vickim

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Have you been to a dr yet? That should be your first stop. I am not a dr but it usually starts distally, in a hand or foot. Twitching is usually later after you have clinical weakness. Everyone twitches and it can become worse with stress or anxiety.

If you are really worried you should go to the dr.
 

Scout1960

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Re: Has pain affected anyone's mobility

My pain level is very high, especially at night. The more I am on my feet, the more severe my pain is. My feet feel like I am walking on bones, my ankles are killing me, etc. My legs shake like jello, and triceps shake also. has anyone made the decision to quit walking because of pain and weakness? Or is there this big defining moment?
 

vickim

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Pain is not usually a presenting factor in als. You need to go to the doctor.
 

Scout1960

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Yes, I have been to the Dr., I have had a brain MRI with lesion, spinal tap which ruled out MS, but have elevated protein in CSF, and have had an EMG which had "increased activity in the cervical area. I am now scheduled for a second EMG tomorrow and a cervical MRI. All at a world renowned clinic which my PCP referred me to. My apologies, I guess with each post, I should make that statement to get that out of the way. I do have weakness which I think I try so hard to overcome with other muscles that I end up with major spasticity and cramping. Makes me wonder if the effort is worth it.

I am just very curious......what are people's stories? Did anyone else have pain? Do you have a defining moment when you realize you can't walk, or shouldn't be walking?

Thanks so much for your time and responses.
 

vickim

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Short version, 6 1/2 years ago I thought my foot was slipping out from under me. 6 months later I went to the dr. Referred to neuro #1 had all kinds of tests, emg was abnormal, polyneuropathy. Referred to neuro #2 no tests only 1 visit, "I don't know what is wrong with you" referred to neuro #3. Struck gold with him. This was over a 5 year period, had 2 more emgs both abnormal he decided a muscle bio. Bingo I had an answer.

Like you I have pain which I take gabapentin for, severe fatigue which I take mestonin for. I have clinical weakness in neck, shoulders, arms, hips and legs. I use a cane and I tire easily. I have given up driving for the most part because I get muscle cramps when in one position too long and fatigue makes ones reaction time slower.

I really hope they find out what is going on with you soon.
 

vickim

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Sorry my post went to moderation..it might show up later.
 

ottawa girl

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Wishing you luck with your upcoming tests. Hope you get good news.

Asking people for their stories will not garner many replies - it's too vague a question and our stories will not really be of immediate benefit to you. ( Also, it's hard for many of us to type)

I would encourage you instead, to navigate the site, and read threads in the ALS general discussion area. That being said, your tests are tomorrow - so hopefully you will not need to return here.

Feeling wobbly and falling were darn good clues :roll: that it was no longer safe for me to walk without assistance. My first purchase was a cane. My second was an AFO ( ankle foot orthotic) for my weak leg; it's served me well for last 7 months or so. Once it's no longer sufficient, I imagine I'll be shopping for a wheelchair.

Best of luck - whatever the outcome - we'll be here for you!
 

JustTrying

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I wish you the best with your tests!
 

bowser

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Yes, I have been to the Dr., I have had a brain MRI with lesion, spinal tap which ruled out MS, but have elevated protein in CSF, and have had an EMG which had "increased activity in the cervical area. I am now scheduled for a second EMG tomorrow and a cervical MRI. All at a world renowned clinic which my PCP referred me to. My apologies, I guess with each post, I should make that statement to get that out of the way. I do have weakness which I think I try so hard to overcome with other muscles that I end up with major spasticity and cramping. Makes me wonder if the effort is worth it.

I am just very curious......what are people's stories? Did anyone else have pain? Do you have a defining moment when you realize you can't walk, or shouldn't be walking?

Thanks so much for your time and responses.

regarding your 2nd paragraph, she started out using a cane and in June of 2011 she took Amtrak alone from MN to MI. At her next ALS Clinic meeting for my wife she was told to start using a walker by the staff at the ALS Clinic. They suspected she was a " furniture walker" while in the house. ( they were right)

She used the walker to go bathroom and after awhile I noticed she dragged her feet a lot while using the walker. One morning ,after I helped her up from bed and was prepared to follow behind her as she walked to the bathroom, she shook her head. Her feet would not move.

The day before, the walker was the mode of walking. The next day it was the wheelchair and the walker was parked for good.

July 5, the wheelchair was parked for good.

Changes, changes. Constant changes.
 

Scout1960

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Thanks Ottawa girl. Your answer about how you are progressing and how you got to the point where you needed help and devices to help you walk are what I'm looking for. Thanks for shAring. I am new at this so don't know the ropes.
I will reprhrase the question Ina cole of days.
Plus, tomorrow will know much more.

Thanks,

Scout
 
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