Pain in Limbs

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Laurencarroll

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Hi everyone. First and foremost, thank you for your help. I have been registered for these forums for a few months but haven’t posted.

My mom is four and a half years into her diagnosis of ALS, limb onset and we are at the point that the only parts of her body that she has true control over is slight movement of her neck side-to-side and she has her voice, although it is very slurred these days. She is on bi-pap 24/7 except to eat and even then she is only able to be off it for 1-2 minutes at a time until her stats drop and she has to go back on.

She is currently in the hospital with pneumonia but they seem to believe that they were able to treat it quickly enough that it has cleared up and we expect that she will be going home tomorrow with my dad who is her CALS. I have no disillusions about how this stay in the hospital is likely to accelerate her progression as I have already seen the changes in her week-and-a-half stay.

Since the start of this diagnosis, she has suffered with extreme coldness in her legs, to the point that her toes and lower feet turn a purple/black colour but her circulation is always fine. We have been told by the neurologists that this is not a symptom of ALS. They keep telling her that it is Reynauds but through my own research on this forum I believe it is acrocyanosis.

However, that is not my question. We have been told multiple times that as the ALS/MND progresses that she would also lose sensation in her limbs. This definitely has not happened. My mom tells everyone that she can feel a fly landing on her foot, she is that hypersensitive. Now she had a meeting with the Internalist doctor that is on her ward and he seems to be very interested in her legs and feet. I guess my question is whether or not having sensation in limbs that have not been functioning (right leg hasn’t worked in 3 years, left leg 2 years, right arm 1.5 years and left arm 8 months) is “normal?”

My mom has never accepted the diagnosis of ALS, and at this point neither my dad or I are going to force her into accepting it but I also don’t want to lead her down a path if there is no hope. I guess my biggest fear is that they will find another diagnosis that is treatable but the damage to her body at this point is irreversible and she will truly become a prisoner in her body for the next 20 years.
 

KimT

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ALS doesn't affect sensory nerves so she will be able to feel pain and other sensations even if all her motor neurons in a given limb are dead.

Does massage and range of motion help her legs? I played cards with a lady who had Raynaud's Syndrome, and her hands would turn almost black. They would be freezing. She found sleeping with warm gloves and socks on her hands and feet helped.
 

lgelb

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I would also look into Vaso-Wraps for your mom's legs. They are sold on line. She might get some relief from a machine that massages her lower legs/feet through alternating compression ("sequential compression device"), or they are sold on places like Amazon.

As Kim says, ALS does not affect sensory nerves. If they really told you that, they don't seem very informed and I would look for another team. But sadly, you have presented no reason not to believe your mom's original diagnosis and so the 20 years scenario is not an issue.

Best,
Laurie
 

nona

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I find that my feet stay warmer when they are elevated but even then I have to use a heating pad a few times a week. Even in the heat of summer, I have a blanket over my legs and feet. And my skin is extremely sensitive. Stray hairs are the worst! Constant splotches and itches, irritation from clothing tags and elastic and wrinkles... Your mom sounds like she's got what I've got.
 

Trixie80

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me too. I am very sensitive to touch and my feet and legs are almost always cold but the rest of me is warm.
 

Dgnk

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I had limb onset, and have had sensory symptoms from the start. All brushed off by neurologists as not part of ALS. The feet can go from blue cold (no matter the weather) and then later feel burning hot and swollen. I’ve also had periods of months when a certain area will feel like I’ve spilled ice water on myself, and there’s nothing there. Bumping my toes can be painful for much longer than it should. Or a tiny itch, that once scratched turns into a growing area of intense itching that will finally melt away after 10 minutes or so. It’s always bugged me how quick they are to say it’s unrelated to the other malfunctions that are going on in brain and spine etc. They don’t understand very much about this disease, how can they be so doggone sure this isn’t another variant and another clue to solving the puzzle.
 

BlsdMama

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I am like your mother in that I have full sensation. As far as her discoloration -my ALS doc explained it like this: When your muscles and limbs are healthy, you have a lot of small movements - shifting weight, rotating your foot, small muscle movernenrs, etc and all of these things keep circulating and healthy movement.
In the cold, my most affected limb gets blotchy and blue. Movement, massage, elevation - all of these help. When it’s hot, it turns red/purple and I have swelling. Elevation helps that.
I get cold very easily. A heated mattress pad with separate side controls is an incredible blessing. The cold at night is uncomfortable and causes my muscles to clench. Heated blankets are something I love.
I’m so sorry for your mama’s struggles. Gently, they sound fairly typical. We don’t lose sensation and I’d hesitate to put a lot of faith in a neuromuscular doc who doesn’t understand that because it’s one of the features that clearly distinguished MS from ALS for me.
 

Laurencarroll

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Thank you everyone for your replies. It is wonderful to have such a resource available. It is also comforting to know that her symptoms are in fact not entirely uncommon. This entire process is so frustrating when every time we would try to get answers regarding her blue/black feet we would just end up getting referred back to our PCP and we would start from scratch. The colour change in her feet was actually her second symptom of this disease, after drop foot well before she lost mobility.
 

affected

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My Chris was still walking a little when he started developing blue areas on his feet and it seemed to me to be linked to his decline in breathing.
 
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