Dysesthesias as part of ALS?

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KarenNWendyn

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I’m wondering if any other PALS have experienced this or know if it’s part of ALS —

My presenting “failure” with ALS was left foot drop. However, about 3-4 years prior to that foot drop, I noticed an odd sensation in the same foot — not exactly a pain, and not a numbness, but more like a “dead” sensation, as if there was impaired circulation to that foot. I’m calling it “dysesthesia” to distinguish it from anesthesia (no sensation) or paresthesia (numbness).

I initially noticed it infrequently, mostly while seated, and I always felt the need to stand up and move my foot when it occurred. It did not occur at night initially. I wondered about neuropathy, but dismissed the idea due to absence of pain or numbness. Incidentally an MRI of my back last year ruled out any nerve root compression. And I’ll add my circulation has always been excellent and the foot has good color.

Since being diagnosed with ALS, I have noticed this odd sensation more frequently, now especially at night. It is rather uncomfortable and particularly annoying since I have little movement remaining in that foot or ankle and can’t seem to relieve the sensation. I sometimes get a similar sensation in other areas where I have had involvement with ALS.

So now I’m wondering if it is from spasticity associated with ALS or perhaps some variant of restless leg syndrome. It mainly occurs in the one leg even though both my legs are weak from ALS.

I’ll talk to my neurologist about it in a few weeks, but I thought I’d ask here first. Thoughts?
 

ShiftKicker

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I feel like this is going to send the DIHALSers bananas, but, yes. In each muscle that has eventually been affected by my spasticity, there has been an odd "feeling"- a resistance, a mild tightness and an almost cool sensation that requires me to engage or shake out the muscle to relieve the feeling. I have been assessed for RLS, and it is not that. I have also experienced akasthisia due to meds, and this sensation is entirely different. It is absolutely related to my spasticity and whenever I get that feeling in a new muscle, the spasticity and muscle popping comes next.

For me, it's a very familiar feeling from my days as an athlete. It's the feeling of potential muscle movement before the GO!! signal. I got it on the line before the whistle blew- when my fast twitch muscles were ready to be engaged, or when I was in play and needed to get somewhere quickly. It was something I'd need to shake out if there was game delay, as the feeling was intolerable once I became aware of it.

Karen, can you relieve the feeling by massaging or shaking out the affected muscle? It would be interesting to find out from your neuro if your reflexes/spasticity is greater in the leg you get the that feeling in. I am sorry you are experiencing something so uncomfortable though.
 

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I presented with left foot drop as well. I don't get the sensation at rest as much as when I tried to run or more recently climbing down from my son in laws truck. I can only describe it as being like stepping down and realizing you have somebody else's foot. Not that it isn't there, it just feels like it isnt my foot. I built artificial limbs for years, maybe this is what a prosthetic foot feels like?
Vincent
 

Clearwater AL

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Karen, does your Neurologist or Clinic not have a web site where you can direct
any questions? My ALS Clinic/Neurologist at Wake Forest does and I get an answer
within 24 hours no matter how lengthy the question or questions.

Yes, it good to ask here for input but your Neuro has your complete history.

Rather than wait a few weeks?

Just a suggestion. Hope you do.
 

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Mine started out with twitches and tingling/discomfort on the bottom of my left foot. Eventually, it went up my sciatic nerve into my butt. No pain, just crawly discomfort. I was so certain it was a pinched nerve. When I went to my local neurologist I had an absent reflex in my left ankle (still do) but a brisk reflex in my left knee. Mine gets worse as the day goes on and I often find myself shaking my feet or bending my knees (it's in both legs now.)

These sensations started long before I experienced any clinical weakness.
 

Clearwater AL

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Yes, as Fiona wrote above...

"I feel like this is going to send the DIHALS'ers bananas,"

So much for dismissing their sensory issues related to ALS. :)

("These sensations started long before I experienced any clinical weakness." Ooops.) :)

Edit.

Maybe one of the skilled and very knowledgeable members could compose a reply
to help DIHALS'ers have a better understanding of this scenario.
 
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Atsugi

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This sounds a lot like RLS. A classic RLS incident starts with a localized feeling of desire to move the muscle. It develops quickly into a creepy-crawly sensation, although there is nothing creeping or crawling. This unbearable and unremitting bothersome restlessness can sometimes be vigorously massaged or even banged into submission very temporarily--it must move as soon as you stop the massage.


In me, sometimes the muscle jerk just happens without warning. The sufferer, if asleep, might not be conscious of kicking their legs in bed, but it does rouse the sleeper enough to prevent good resting.

Over the years, it can be powerful enough to flip me over on the mattress. I take meds that prevent it. If I forget the meds, I can forget about going to sleep--I'll be kicking and punching every few seconds for the whole evening and nighttime.


Of course, if the motor nerve is unable to move the muscle, then the restlessness can't be satisfied. Interesting.
 

KarenNWendyn

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I agree this looks like spasticity vs RLS. I’ll be asking the neurologist soon and will let you know his answer.

As far as addressing DIHALS concerns about sensory symptoms, I’ll just say it never would have entered my consciousness that my symptoms might have been the start of ALS, and I’m still not yet sure if they’re even related — hence my query here. I didn’t even bother to get it checked out when I first noticed the intermittent dead foot sensation. I just thought it was weird and went on with my life.

And I say this from the perspective of being a physician who specialized in musculoskeletal and autoimmune disorders, so I saw lots of neuropathies and all kinds of weird things including motor neuron disorders.

No physician would have diagnosed me with ALS based on the sole symptom of dysesthesias in a leg..

I’m only looking at it now in retrospect, now that I have ALS, wondering if that might have been an early symptom. But there’s no way to know. And it probably doesn’t even matter.

As far as how to deal with it — I’m betting my neurologist will suggest either Gabapentin or Ropinirole, neither of which thrill me. I might try rubbing CBD cream on the foot for the heck of it, or try inflatable massage cuffs (mentioned previously in the “gadgets” sub forum).

I’m still curious if others have experienced similar symptoms. I agree with Vincent that this may be what a prosthetic foot feels like. Fortunately it’s not quite that bad, yet....
 

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Karen, massage upward might help as well, and heat (as regular readers know, I'm a fan of low voltage heated mattress pads). You might try Vaso-Wraps to improve the microcirculation (I think it can be semi-silently compromised in ALS as the GI/respiratory tract "gates" can be) in case that helps. They did help Larry.
 

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I've not had any sensory symptoms except for mild pain due to overexertion. In my case, body parts not working right has been the issue from the beginning of symptoms.

My first indication that something wasn't right was tripping when climbing stairs after a long walk. I remember being puzzled by this as I didn't feel any weakness or have any sensory symptoms at all. Later I noticed weak left foot dorsiflexion & foot drop. Next, I couldn't hold the fingers on my left hand together. Disfunction has worsened and slowly spread to other areas.

Today I feel perfectly normal when sitting at rest, except for mild fasciculations. However, movement of extremities is difficult/limited & there are things my wife has to do for me.
 

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That does sound similar to RLS; I wonder if supplementing magnesium would help for you?
 

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In my case, RLS was ruled out in a sleep study.

The things that seem to help me is massage, putting heating pads on my legs at bedtime, THC cream. Probably the magnesium helps,too, but I've been taking rather high doses of magnesium for many years and it was originally recommended by my cardiologist for a benign yet bothersome arrhythmia.
 

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My Chris was bulbar onset, but his arms began to fail nearly as quickly. He had leg symptoms but mildly from early as well. He did not have any kind of Dysesthesias at all and we often talked about the lack of sensory symptoms.
He had a lot of spasticity and so we had heaps of pain, but that was quite different.
 

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Karen,
I’ve had similar sensations, though maybe not exactly as you describe, and spasticity always followed. Years ago, before I knew what was going on with my health, I remember telling my doctor that my circulation felt impaired in my left arm, as if it was being gently squeezed. Fairly recently, my right hip, leg, and foot felt strange—numb-like, ticklish, and extra sensitive (hard to describe) for a few months. Now the sensation is almost gone but that side is more spastic with more clonus in that ankle when I ‘walk’ with a walker.

I can’t really remember what it feels like to be physically comfortable anymore. When I was healthy I didn’t necessarily associated pain and discomfort with disability, for example when I would see someone with cerebral palsy or a similar disorder, but now I know better. Talk about ignorance.
 
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