Laurencarroll
New member
- Joined
- May 14, 2020
- Messages
- 5
- Reason
- CALS
- Diagnosis
- 06/2016
- Country
- CA
- State
- AB
- City
- Calgary
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.
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.