Numbness and Tingling and Clinics

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Lkaibel

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My PALS said he has numbness and tingling in his feet and toes. He legs have just recently become weak enough to get orthotics (getting fitted tomorrow). He still walks without a can or walker. I heard him complain of some of this a few months back, but he said it is getting more intense particularly when he has been on his feet more. I thought this was not generally seen in ALS because these are sensory symptoms?

Anyway, wondering if others have this and how they deal with it. Our next clinic is mid-August so we would have to put a call in to the Dr. to ask about it before then.

Next question, how do PALS here feel about clinics? I have heard some people just do not do them because they seem mostly to document decline. Others feel they are helpful.
 

lgelb

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At the beginning, a clinic can be good because you need rx for equipment. Later on, it becomes less of a thing for many people. There's no one philosophy that holds true because the clinics vary widely.

There are a lot of sx in ALS that may seem sensory but come back to motor. I would make sure his breathing is OK and do range of motion exercises even though he still walks. If his legs/feet are weakening, the process of compensating unconsciously, dragging, etc. could cause sx as you describe. He may also be moving less in sleep.
 

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From the beginning I've had a lot of tingling. Sometimes it's hard to distinguish from the fasciculations and the tingling. Mine, I believe, is from loss of muscle in my butt and legs....sort of sciatica-like tingling with some pain thrown in for good measure. It's the worst when sitting for long periods of time. Better when walking or in bed.
 

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The thing with 'sensory symptoms' is that they are not primary ALS symptoms and are not the first things a PALS experiences.

Spasticity and atrophy do end up producing sensory issues from tingles, aches and indeed pain.

We harp on the sensory thing in DIHavers because these are not the kinds of symptoms that lead someone to think maybe I have ALS.

Meaning - if someone says I have twitches and tingles, no one would suspect ALS, not if that is the sum of their symptoms.

If a diagnosed PALS starts to lose muscle mass and functionality, sadly they begin to experience many things as a result of that structural change and the extra pressure on joints or nerves.

Making sure limb positioning is well supported when sitting and in bed is really important as well as massage and ROM. Meds are something that you want to consider when mobility becomes really limited and the results of the muscle loss and pressure on joints is not alleviated by the above.

There are lots of threads where clinic pros and cons are discussed and as has been said it's widely variable and a personal choice.

Being in Australia, our experience was a little different because of our health system, but in short the clinic was hours drive away and in another state. We only saw a neuro there, not a whole team because we belonged to another state. We only went twice, then found a highly qualified physician in our area that is very interested in ALS and looking after a lot of the PALS in the area and we found he worked better for us. He is actively trying to get an ALS clinic going in my local town and if that had been operating we would have chosen to attend it.

Hope that helps a little :)
 

soonerwife

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My PALS has complained of numbness in this right thumb and index finger. The neurologist said it could be carpal tunnel that is caused by ALS because of the way he holds his wrist? No way to know for sure if it is that or the beginning of atrophy in his hand?

My PALS hates the clinic but mainly because he is not very social and doesn't like to go to the dr... Our dr is seeing him first and telling him who he thinks he should see and then he is making the decision about who he will see. It worked well last month when we went. Husband agreed to go back in 3 months when he had said June was his last visit.

I have heard others at our local resource group that love it. So I think it is different depending and personality?
 

tripete

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My biggest complaint about clinic (and the whole of the medical industry) is that as a general rule they don't listen. They lump us into a one size fits all bag instead of treating us as individuals and hearing what we are saying. If the chart says this than it must be this blah blah blah. Insurance and law suites drive them not patient care and logic.

I do like to have the information they provide me, but I have always been a person who solves things based on knowledge and who likes to be prepared. So if you can get by the crap the data can be useful.
 

Lkaibel

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Our Doctor is a great guy and everyone we met (well save for one snotty nurse, but there is always the ONE lol!) at our day - long diagnosis and clinic adventure was great. I can see though how the key may be getting to the people you want to see rather than everyone in the medical speed dating chain. I did also appreciate the open minded attitude of everyone concerned when we talked quality of life choices.

We did just discuss doing more of the stretching and ROM exercises the PT mentioned and gave instructions for last week for the legs and even arms. He has twitches in his arms but no loss of strength yet.

Wow. This guy had the body of a thirty year old. To look at him he still does. He was a personal trainer for several years, and even now in his 60's many would comment on his strength, grace and good looks. On the 4th of July last year, he skittered up to the garage roof on a ladder to get a better look at the fire works. A friend laughed and said "just like a cat!" This 4th of July we were absorbing the shock of this diagnosis. How ironic it is that this very body, this well-tended, never sick prize has betrayed him. Meanwhile, I am taking my fat 51 year old self to work this morning with a little tendonitis in my overworked wrist, but overall none the worse for wear.

Thanks all for being so helpful, much appreciated.
 

KimT

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My local neuro has helped me more than the Center of Excellence I visited once every three months. He and I go back 15 years because of migraine and Meniere's disease. He is much more focused on me as an individual with individual needs. He was also the one who wrote the Rx for B-12 when the "Center of Excellence" told me my B-12 level was already too high.
 

SKlocinski

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Tom gets numbness and tingling in his feet. We think it is because he has no fat padding anymore and sitting for long periods of time causes it. He also has some spinal degeneration so that could be a cause as well as the ALS
 

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Lenore, as you can see, experiences at clinics differ. We love ours. Matt is at 2 1/2 years now and every time we go in he is treated like an individual and we come away with things to try, equipment, medication adjustments---something (or things) to make life better or easier. We only see the specialists that are relevant. If something comes up and a different speciality is called for, then that person comes in. They are very flexible.

The tingling and numbness sounds like pressure on nerves--the neurologist might be the one to ask. Matt has sciatica and is going in soon for his second round of cortisone injections (we are trying to wean him off some of the meds).

About fitness levels and body types--we have the same situation here. My husband was at his prime and I am certainly not. We always thought he'd end up caring for me at some point. This disease--it takes out the best of us.

Becky
Queen of Everything (sooner or later)
 

Lkaibel

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The Doctor said at this point he does not think it is actually ALS related. He is even borderline for needing the orthotics, so he said "not yet" on being ALS related. Dr at least now is blaming his back - some spinal stuff that showed up on MRI in diagnostic process. Who knows - it's not too bad at this point and he said ALS related or not, ROM seems to help. I think ROM exercises feel good period.
 
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Nuts

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We do tend to instantly think ALS when things go wrong, but often issues are a byproduct of ALS. I'm trying to get my hubby off of some of the meds he takes for pain. Will your ALS doc, who is a neurologist, not address other neurological pain?
 

Lkaibel

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I am not sure yet where he is on the pain thing. I do know we got a VERY quick "you will need to see your primary" when we talked about sleep issues. Our primary did a medication for that so Brian is sleeping which is great. Brian is also saying his left leg, the one that had the nerve entrapment from the fall that got all of this diagnostic process in motion is feeling better. WE think its from the recovery/easing of the nerve entrapment part on the left leg. That's good too - weakening muscles from the ALS are enough without dealing with a nerve entrapment too. I am glad not to see him pushing himself so hard anymore too. Before the Dx it was like he was trying to prove to himself this was all in his head or something.
 
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