KariW
New member
- Joined
- Jan 19, 2017
- Messages
- 3
- Reason
- Learn about ALS
- Country
- US
- State
- NY
- City
- Boonville
Hi everyone,
This is my first time posting here so please be patient with me. My mom has been going through some problems that started back in August (5 months now). We have been to see a neurologist who is getting ready to make the final diagnosis, but we are not sure that this is als (he is leaning towards this). We are unsure though because of the symptoms/progression she has been having.
So starting in August, my mom noticed a strange tingling sensation in her left arm that went on for a week or so. After this, she noticed her left shoulder starting to become weak (hard to lift up above her shoulders). Her arm continued to get progressively worse over the next month to the point she was barely able to use it, but could still write (left handed), go to work, etc. It was also around this time (so late August-mid September) that she noticed her feet were feeling weird, almost a numb feeling that she thought was maybe caused by wearing flip flops over the summer. We thought that maybe her left arm weakness was due to a pinched nerve, so my sister (physical therapist) gave her some exercises to do. Her arm did start to get better at points, but then she took a turn for the worse.
Her left arm continued to get progressively worse and she started to notice the tingling starting in her upper legs. At this point, she began to become extremely worried and went to her doctor. Her doctor was absolutely useless and blamed the whole thing on anxiety (my mom has severe anxiety), but she continued to get progressively worse. By November, she was still able to walk, but was using a walker to get around (she stopped going to work at this point). The doctor did order an EMG, so she had that done which showed possible ALS or Guillian Barre Syndrome.
FINALLY we were referred to a neurologist, but of course had to wait a month before we could get in. So in the mean time, my mom continued to get worse and worse. We did have a OT and PT coming to the house 4 days a week to work with her, and we honestly thought she was showing improvement. She was able to move her arm again in different ways, and move her fingers again for a short time. But then all of a sudden (like literally over the weekend) she went completely downhill. Legs became more weak and her left arm became completely useless. My mom went to the ER but they were unable to help her of course, so we just had to wait to see the neurologist. In the mean time, my mom became unable to walk (had to get her a commode and wheelchair). She also started having the tingling sensations now in her right arm, and then following that noticed her right arm is starting to become weak starting in the shoulder (just like the left arm). She is still able to use it for now, but who knows how long it will last.
We went to the first appointment at the very end of December. The doctor is very nice, he didn't even want to mention als at the first apt before doing all of his own testing. So he ordered blood tests to check for everything including lyme disease, etc.(everything came back normal except she has low folic acid). He also wanted to do another EMG which he performed himself. After doing the EMG, he told us the EMG shows ALS. So of course we are completely devastated. He said he still needs to get all the information together and analyze it, but he was pretty much telling us that it is ALS. My mom had an MRI done on the brain this week which we are still waiting to hear the results, although we don't expect much. Obviously we are hoping for anything except ALS. We go back next week on the 25th to meet with them again and talk about everything.
Me and my sister both kind of have a gut feeling that this ISN'T als, but maybe we are just in denial. I guess I am looking for some sort of clue from people that have experienced and been diagnosed with ALS. I thought that sensory symptoms were not a part of ALS, and even the doctor has said it is strange but almost just writes it off as if it's nothing. She also now has neuropathy in her feet which I know isn't normal with ALS. I just don't want this to go on and end up being misdiagnosed. She started having tingling in her neck and now has noticed her neck has become slightly weak. And now she is also having breathing problems (when she lays down it is hard to breathe) - she felt that before it happened too.
So recap - she had tingling sensations BEFORE becoming weak, she can tell when something is going to get weak because she can feel it beforehand which is very strange to me. The doctor is leaning towards ALS, but we are asking that they do a spinal tap on her to rule out CIDP (my sister is convinced this is what she has).
So I guess my question is, has anyone else experienced such strange symptoms? I believe the only upper neuron signs my mom has right now is the hyperreflexia. No speech issues, etc. All of this has literally happened in 5 months and while I know that all ALS patients experience different progression, this seems faster than most. Can anyone provide me with any insight at all? Depending on what happens, we may go for a second opinion, we're not sure yet. Anything is helpful!
This is my first time posting here so please be patient with me. My mom has been going through some problems that started back in August (5 months now). We have been to see a neurologist who is getting ready to make the final diagnosis, but we are not sure that this is als (he is leaning towards this). We are unsure though because of the symptoms/progression she has been having.
So starting in August, my mom noticed a strange tingling sensation in her left arm that went on for a week or so. After this, she noticed her left shoulder starting to become weak (hard to lift up above her shoulders). Her arm continued to get progressively worse over the next month to the point she was barely able to use it, but could still write (left handed), go to work, etc. It was also around this time (so late August-mid September) that she noticed her feet were feeling weird, almost a numb feeling that she thought was maybe caused by wearing flip flops over the summer. We thought that maybe her left arm weakness was due to a pinched nerve, so my sister (physical therapist) gave her some exercises to do. Her arm did start to get better at points, but then she took a turn for the worse.
Her left arm continued to get progressively worse and she started to notice the tingling starting in her upper legs. At this point, she began to become extremely worried and went to her doctor. Her doctor was absolutely useless and blamed the whole thing on anxiety (my mom has severe anxiety), but she continued to get progressively worse. By November, she was still able to walk, but was using a walker to get around (she stopped going to work at this point). The doctor did order an EMG, so she had that done which showed possible ALS or Guillian Barre Syndrome.
FINALLY we were referred to a neurologist, but of course had to wait a month before we could get in. So in the mean time, my mom continued to get worse and worse. We did have a OT and PT coming to the house 4 days a week to work with her, and we honestly thought she was showing improvement. She was able to move her arm again in different ways, and move her fingers again for a short time. But then all of a sudden (like literally over the weekend) she went completely downhill. Legs became more weak and her left arm became completely useless. My mom went to the ER but they were unable to help her of course, so we just had to wait to see the neurologist. In the mean time, my mom became unable to walk (had to get her a commode and wheelchair). She also started having the tingling sensations now in her right arm, and then following that noticed her right arm is starting to become weak starting in the shoulder (just like the left arm). She is still able to use it for now, but who knows how long it will last.
We went to the first appointment at the very end of December. The doctor is very nice, he didn't even want to mention als at the first apt before doing all of his own testing. So he ordered blood tests to check for everything including lyme disease, etc.(everything came back normal except she has low folic acid). He also wanted to do another EMG which he performed himself. After doing the EMG, he told us the EMG shows ALS. So of course we are completely devastated. He said he still needs to get all the information together and analyze it, but he was pretty much telling us that it is ALS. My mom had an MRI done on the brain this week which we are still waiting to hear the results, although we don't expect much. Obviously we are hoping for anything except ALS. We go back next week on the 25th to meet with them again and talk about everything.
Me and my sister both kind of have a gut feeling that this ISN'T als, but maybe we are just in denial. I guess I am looking for some sort of clue from people that have experienced and been diagnosed with ALS. I thought that sensory symptoms were not a part of ALS, and even the doctor has said it is strange but almost just writes it off as if it's nothing. She also now has neuropathy in her feet which I know isn't normal with ALS. I just don't want this to go on and end up being misdiagnosed. She started having tingling in her neck and now has noticed her neck has become slightly weak. And now she is also having breathing problems (when she lays down it is hard to breathe) - she felt that before it happened too.
So recap - she had tingling sensations BEFORE becoming weak, she can tell when something is going to get weak because she can feel it beforehand which is very strange to me. The doctor is leaning towards ALS, but we are asking that they do a spinal tap on her to rule out CIDP (my sister is convinced this is what she has).
So I guess my question is, has anyone else experienced such strange symptoms? I believe the only upper neuron signs my mom has right now is the hyperreflexia. No speech issues, etc. All of this has literally happened in 5 months and while I know that all ALS patients experience different progression, this seems faster than most. Can anyone provide me with any insight at all? Depending on what happens, we may go for a second opinion, we're not sure yet. Anything is helpful!
