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Mary J

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Good Morning: My husband, who is a US Vet, was experiencing what we thought was a bulging disc, that also entailed numbness and pain in his feet and legs. Then the muscle spasms in the middle of the night that made him scream became an every night occurrance. He also was experiencing crushing pain in his left thumb, forearm and his left shoulder for no reason. He then was number on half of his body and we took him to the ER. The doc there examined him and noticed over-reactive reflexes but didn't say anything to us at the time. The orthopedic surgeon said there is nothing wrong with his back and sent him to a neurologists the next day. The neurologist had no bedside manner and examined him and gave him Advil for his pain and sent him on his way. He said there was nothing wrong with him, neurologically. We went from neurologist to neurologist that specialized in certain areas--one for MS, who said no lesions on his brain, so no MS. Went to a Parkinson's specialist...no tremor, so no PD. Not lyme disease, fibromyalgia, metal toxicity, or Lupus, according to a rheumatologist. Because of the many visits to neurologists who find "nothing wrong with him", we are able to get in to any other neurologists right now because of what they read in his medical records. In the last two months, my husband's pain has been waning and now his left arm is smaller than his right, as well as his left leg compared to his right. He now is very weak in those limbs and feels absolutely horrible all the time and has extreme fatigue. This is a man who used to power through anything and had tremendous strength and has done a lot of hard labor in his life. I think the doctor expected really bad weakness recently, but he's weak for how HE used to be....now he probably has the strength of an older woman, so I think he wasn't deemed "weak enough". Now he can't even work at his desk job he's held the past five years (which I made him get because I thought he was experiencing back troubles). His appetite is gone and he lives in his carrharts in the house because he's freezing all the time. Walking up the stairs to our bedroom is a chore and has to stop get his strength to continue. He is taking many of the medications already that PALS take, such as anti-tremor, pain meds, a muscle relaxer so he doesn't have leg spasms and pain that goes with it. He also has had fasciculations in his legs, arms, back for about a year, and now just in the past month in his stomach and chest . His sleeping has become eerily quiet. I can hear him breathing just fine, but it's just not snoring like I've been subjected to for almost 24 years. He has thickened mucus and his manual dexterity is getting worse. Most of the symptoms you are reading have been going on only since January of this year...so, only eleven months, now. ****We seem to NEVER read or find on this forum much about Limb Onset as much as I do bulbar onset. Can ANYONE please share their experience/story regarding LIMB ONSET to Bulbar symptoms, and how long did it take to move along to it? I know all stories are different, but it would be nice to gauge it. He doesn't have drop foot (yet), although walking and standing up is very stiff and laborious. I never thought we'd ever experience this type of delay in getting a diagnosis from someone, but he's going downhill fast, and we just want answers. Can anyone recommend a doctor in Iowa who specializes in the TRUE symptoms of Limb Onset ALS? I believe many doctors have a misguided notion that severe pain in limbs is a major symptom with ALS and they don't recognize it. I am so very sorry this is so long. Had to get it all out in one fell swoop and see what any of you can do to help guide us, or if you, too, had a bad experience getting a diagnosis for Limb Onset because it didn't include the mouth and foot drop up front. Thanks, again.
 

Mary J

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Okay, a few typos in the original post.....I think doctors do NOT realize there is great pain in some ALS patients. Clearly a misnomer that there isn't pain with muscle spasms. Also, please note that the muscle between the left thumb and the hand has gotten very, very small and he can't even touch his thumb TO the hand, anymore. Thanks, again.
 

Atsugi

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Thank you for being so detailed and including so many symptoms. Has he had an EMG test?

Perhaps I missed it, but I don't think you mentioned a paralyzed muscle--a limp, useless muscle that doesn't activate. Which muscle is limp and unable to contract?
 

Nikki J

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My sister and I are limb onset. My sister now late stage started with her hand and inability to button shirt and other fine movements. It was considerably later than she had twitching and cramping.
I am leg onset. First symptom ankle gave out and I fell. I twitch I rarely cramp ( knock on wood) and I have no pain. I have never had numbness and I do not believe my sister has either. This does not sound like ALS to me from what I can make of your description. As Mike asks was there an EMG?
 

GregK

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According to the ABCs of ALS on YouTube, ~66% of ALS begins with Limb onset and ~25% with Bulbar.
Yes, the leg cramps can be excruciating; I described them as a 'fist growing out of the back of my leg'. They were my first symptom and appeared 2 years prior to Diagnosis and 1 year prior to foot drop.

If your husband gets them in bed from the normal stretching ('pointing') of his legs the following might help.

Go to a sporting goods store (or Amazon) and get one of those ~6" x 18" foam exercise rollers. Put it at the foot of the bed, under the covers, where he can rest his foot against it. It will both help prevent the pointing and serve as a base to press his foot against to return his foot to the normal position and to recover from the cramp.
 

Mary J

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Hi. EMG came back inconclusive, so we're waiting a few more months to do another one. I only mention the numbness in his feet because the Babinski method has proven useless in diagnosing him, because he can't feel the outside edges of his feet to even do the test. Overactive reflexes is inconclusive because we have one doc who says there isn't any over reactive reflexes, but another one does. Right now, there are no limp or paralyzed muscles that I am aware of, but all are quite weak and is exhausted all the time.
 

Atsugi

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Mary J wrote: "Can ANYONE please share their experience/story regarding LIMB ONSET to Bulbar symptoms, and how long did it take to move along to it?"

My PALS Krissy (RIP) had no numbness or pain at the beginning. She simply tripped because her foot didn't lift up. She was quickly diagnosed based on an EMG after many tests ruled out many other things. She lost the use of her feet, her legs, her fingers, and then her hands and arms as the ALS progressed from bottom to top. When she was wheelchair-bound, she sometimes got pain from swelling in her legs which was relieved by massage and pressure. Once she was bed-bound, her neck and tongue were affected. Her urine turned dark and fuzzy as her organs broke down. A couple of weeks after that started, her eyes locked up in the forward position, unable to blink. She died quietly in her sleep, supported by morphine to prevent air hunger and anxiety. She had lasted 9 months from diagnosis.

Typically, I don't think of ALS-affected muscles as "weak" because the disease is in the motor neurons. It destroys the nerves in the brain and brain stem so that the muscles don't contract at all. Krissy didn't have pain at the beginning, because ALS doesn't affect the "feeling" nerves, only the "motor" nerves. There was certainly no numbness. And she never feel exhausted. The muscles simple didn't work.

It sounds like your husband has a very painful neuropathy of some sort. There are many. But I don't read ALS in your description.
 

Dusty7

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“…numbness and pain in his feet and legs. Then the muscle spasms… I believe many doctors have a misguided notion that severe pain in limbs is [NOT] a major symptom with ALS and they don't recognize it.”
I believe on the Forum we have pretty much agreed that pain is not a primary symptom of ALS, but is secondary to the spasms that are common in ALS.

“Overactive reflexes is inconclusive because we have one doc who says there isn't any over reactive reflexes, but another one does.”
Yes, one of the problems looking for UMN signs is that they are very subjective. Is there hyperreflexia? Is there spasticity? Is there a positive Babinski sign? All a bit subjective and different neuros may see it differently. LMN signs are much more obvious, especially by EMG.

“…EMG came back inconclusive…”
Don’t know what to say about that, all of mine have been abnormal. I would get a copy of his EMG. How many muscles showed insertional activity? Fibrillations? Abnormal MUPS? And which muscles tested clean? Ask the neuro what is inconclusive.

“…pain has been waning…”
Is this because his cramping is waning?

“…left arm is smaller than his right, as well as his left leg compared to his right… "
Can you measure these differences or is this by visual observation?

“…he's weak for how HE used to be…”
But a neuro does not know how he used to be, so technically this is not clinical weakness (cannot be measured in the clinic).

“Walking up the stairs to our bedroom is a chore…”
But he can still lift his feet and his legs can lift his body?”

“…the muscle between the left thumb and the hand has gotten very, very small and he can't even touch his thumb TO the hand, anymore…”
The muscle on the back of the hand between the thumb and the index finger is the first dorsal interosseous (FDI). The main muscle between the thumb and index finger on the palm side is the abductor pollicis brevis (APB). Which muscle doesn’t work? What can’t he do with that hand that he can do with right? Button a shirt? Pick up a pen? Crush an aluminum can?

“…how long did it take to move along…”
Progression is highly varied. According to The ABC’s of ALS, about 5% of PALS are fast progression, 10% are slow progression and the other 85% are normal progression—though nothing about ALS is normal. At this point, I happen to be one of the lucky 10%, so telling you about my rate of progression wouldn’t be any more predictive than hearing about Atsugi’s fast progression story above. We're sort of at opposite extremes.

I am limb onset and I can tell you that mine probably started with foot drop (R) right side, then moved into my calf (R) and then over to the left. When I could no longer do a calf raise with either leg, I noticed that my left calf had atrophied (1” smaller than right) and my ALS journey began (with my PCP). Four abnormal EMGs and several months later, clinical weakness is moving up right leg with more leg movements I cannot do. FDI and APB of left hand continue to weaken. Denervation and reinnervation in bilateral legs, left hand and paraspinals (lumbar, thoracic and cervical). I expect my problems will continue to move slowly up my body, but I know it could jump or accelerate at any time. IIWII, so live for today.
 

vzandt

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Ours limb onset started with falling. He would be fine...and then fall. He said his foot wasn't listening to his brain. He had small spasms in his foot that would keep me awake for hours. He slept through them. His reflexes were off the charts. No doubt whatsoever. He tired very easily.
 

Mary J

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Thank you, everyone. The muscle wasting in his arm and leg and the muscle between his index finger and thumb are both noticeable with the naked eye and and measurable with a tape measure. Yes, the pain is waning because the cramping is waning in his legs and now they are just weak in that they feel ultra exhausted and he can't do a lot of things with his left hand and arm he used to be able to do. Fasciculations keep him up all hours of the night, and he feels them often all day, as well from his legs to his chest. Yes, he can still lift his legs and feet as of now, but it is coming harder and harder to go up and down the stairs. As I said, no drop foot...yet. I do believe it is the APB muscle that is getting much smaller and is continually becoming more and more useless. Picking up smaller items is difficult with the left hand because of that. The pain is from the muscle cramping, which goes on all the time in his left forearm, which is the one that continually grows smaller and smaller, as well as sometimes in his shoulder. I appreciate all of your feedback and stories, and should anyone else have questions/information they want to throw at us, we really appreciate your time and concern enough to respond back to us. Sincerely, Mary and Tim
 

Music67

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Hello Mary J - I'm so sorry your husband is going thru this! I have a few suggestions to help control the fasciculations that (forgive me) I have mentioned a couple of times recently - 1) Rubbing cocoanut oil in the affected areas slows them down or stops them for me, 2) if its the legs involved try curling them by either sitting up or laying in a fetal position with the idea that the position of the spine may be causing them to happen.
 

ECpara

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Regarding those leg cramps ......This may sound crazy, but it has worked for the frequent excruciating cramps I was having at night in my calves. Incidentally, I'm not the one with ALS, my husband is. I get cramps from physical activity. I keep two unwrapped bars of soap under the covers. When I feel a charley horse coming on, I lay my calf on the bar of soap and it goes away! My aunt told me to try it, it worked for her husband, and now it sure works for me.
 

Atsugi

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The "cramps" I experience are diagnosed as Restless Legs Syndrome. When the medication is not enough to prevent my back, buttocks and legs muscles from jamming up, I keep my leg wrapped warm and curl up somewhat close to a fetal position.
 
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