Old 04-02-2014, 01:37 PM #1 (permalink)
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Default Back pain...

My PAL had recently developed a "pinch" in his lower back. About a week ago. Said pain/tingling went from his hip down to his foot. Sometimes on both sides. He complained of it feeling numb and cramping. It was so bad at times he couldn't walk.

We were diagnosed with Bulbar onset in September. Anyhow doc says it seemed muscular and not a bulging disc. Took him after that to the chiropractor who said the same thing. Gave him some stretches to do but nothing helps the weakness in his legs and he says today that his foot isn't doing what he wants it too. However he has no more back pain.

My question is does that sound like its back or ALS related... I don't know whether to take him for an MRI and all that... money is tight and if its his back, I would think all he could do would be stretching and what he's already doing. If its ALS.... we don't want to even think about that...

Just wondering if anyone else who is bulbar onset had any instances with back pain or anything like that. Up until now he will get tired or heavy legs and arms but nothing like this. Thanks for reading.
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Old 04-02-2014, 11:22 PM #2 (permalink)
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Default Re: Back pain...

If the pain has resolved, I would agree that the MRI doesn't seem worth the expense at this point. As muscles weaken and atrophy, the adjacent soft tissue responds as well. You are losing the whole lincoln log structure of how things normally stretch and move. Remember, all bulbar onset means is the first symptoms were bulbar. Limb progression can and often does occur early in "bulbar onset" ALS.

Bottom line -- even if it is a bulging or herniated disk (though the disappearing and bilateral pain argues against this), surgery would not be recommended barring intractable pain/severe cord compression even for a healthy person, so rest, heat, stretching, NSAIDs and the like would be recommended either way. You might consider massage as well (massage schools often offer discounts) as long as you monitor that the intensity is appropriate. It won't save the nerves but can help prolong function.
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Old 04-04-2014, 10:08 AM #3 (permalink)
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Default Re: Back pain...

Sounds like a good massage therapist might be a good first step
You are describing typical nerve issues that may not be ALS related at all
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Old 04-04-2014, 01:08 PM #4 (permalink)
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Default Re: Back pain...

I agree with lgelb about the surgery, so doing the MRI is doesn't make sense. My husband does have bulging discs, proven by MRI done early in his diagnoses process, and we all know that the best way to support a disc is core strength. My husband has lower onset ALS and his core was one of the first things affected. We finally just discovered a move that has made a huge difference for him in reducing his back pain. Because his L5 SI is so lax he gets a lot of sheering through there, so anything that makes his pelvis tilt causes pain. When I lay him in bed I take one knee and bring it up to his chest with some pressure and hold it. Of course if this hurts back off, or stop. I straighten it out and do the same thing to the other side. He says that he feels almost instant relief, and has been sleeping through the night. It use to be that he would wake up in so much pain I had to get him out of bed and into his PWC. He does not tolerate any NSIDS at all so this had been a God send. I hope this works for you, as it is fairly easy, and it doesn't cost a cent.

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Old 04-04-2014, 01:46 PM #5 (permalink)
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Default Re: Back pain...

It does not sound like ALS. It sounds like it is a muscular thing. I would consult with a doctor who specializes in back pain before setting up an MRI

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Old 04-04-2014, 04:44 PM #6 (permalink)
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Default Re: Back pain...

Hi- it doesn't sound like ALS to me either. I go to for weekly therapeutic massages that really are helpful to me. I highly recommend trying them before getting an MRI. It may be as simple as a pinched nerve that a position change may alleviate.
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Old 04-05-2014, 06:15 AM #7 (permalink)
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Default Re: Back pain...

Thanks for your advice. I am going to set him up for a massage. Three days later and still no back pain, but he said his foot is numb. He's been walking funny and sitting more than normal. He woke me up last night with "pain" in his ankle area and said it felt like a loss of circulation. I have no idea about how that would feel. I know sharp, shooting, throbbing etc. His descriptions of what he is feeling is so confusing. He doesn't want to go back to the doc to follow up on this possibly being a back issue.. He told me he knows its ALS.

He just had another EMG last month to see if he would be eligible to participate in research drugs. He had shown NO progression in the limbs and we were so excited. He was turned down for the research options at this point. The doc told him about another patient who had bulbar onset diagnosed TEN years ago and still has little or no progression in the limbs. Again we were so excited. Kind of like when the ENT doctor told him his throat issues were neurological but DEFINITELY not ALS.

We have been living in denial you know. At times we discuss it, address it, or are forced to remember. Meanwhile I think we both just shut those thoughts as much as possible. It has been our way of coping. So we will do a massage, thanks again for helping.
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Old 04-05-2014, 05:13 PM #8 (permalink)
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Default Re: Back pain...

check for neuropathy in feet....I have it in both feet...separate issue from als
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Old 04-09-2014, 10:29 AM #9 (permalink)
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Default Re: Back pain...

Well, still no pain and he complains now his left foot is still not "working" right. He says it feels like he lost all circulation in it and wakes up with a pain in his calf he describes as gripping, not sharp. I asked if it was a crampy feeling and he said "kinda". Still no back pain or hip pain.....

You know I look at some of these posts and I remember doing so much research to see if what he was bothered by could be ALS. Hours and days lost to reading, worrying, and kind of educating myself. I feel sorry for the people who are still awaiting diagnosis of whatever is bothering them. Months and months of just waiting.

I feel the same way now. To watch him walk funny, wondering if its time to start planning or preparing more. How will our lives change if he loses the ability to walk. It's so frustrating to watch him in constant anxiety over his foot "not working right" Just wanting so bad for someone to say, "No your limbs are fine, you just have a pinched nerve." Or "No one with ALS has limb involvement that starts that way". I called the nurse at the ALS clinic and she couldn't tell me anything but to wait until his next apt at the end of the month.

Sorry just venting...
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Old 04-10-2014, 03:34 PM #10 (permalink)
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Default Re: Back pain...

I'm so sorry that you are going through this, and your PALS of course!

I would love to give you the comfort you seek, but this disease sucks and as CALS we need to find a way to balance just living a day at a time with what our PALS has, and trying to stay a step ahead.

Unfortunately he will lose his ability to walk. The real 'sucks' part is no one can really tell you if that will be tomorrow, next month or next year.

I have found that trying to stay a step ahead helps alleviate some of my distress. So I've always had equipment here in advance, before it was needed, or at least before my husband would agree to start using it. It has meant avoiding suddenly being in crisis.

In answer to your original question, my PALS has only just started getting some back pain recently, and it is due to the muscle wastage. He only really gets the pain when doing 'standing' transfers' - he cannot hold his body upright, he 'stands' but in a bent over shape, no wonder it hurts his back!
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