JoelClifton
Member
- Joined
- Oct 12, 2016
- Messages
- 11
- Reason
- Learn about ALS
- Diagnosis
- 11/1982
- Country
- US
- State
- TX
- City
- Mansfield
I have been trying to research ALS as my wife has been going through a hard time the past year and a half and with most recently having some symptoms that sound like it could be ALS. All I can do is try to be there for her, but Im scared myself over this. She has it set in her mind that she has it because of how she feels with her symptoms.
At first she started off just not feeling well and tired all the time, so she would take naps a lot but still feel tired. She would get this feeling in her arm as if it was feeling heavy or fuzzy which would come and go. she was just overall feeling ill. she would get lots of headaches and light headed all the time. she is light headed all the time if we are walking around. She feels like this fuzzy pressure in back of head
She had mentioned a few times in the beginning that she couldn't initiate a swallow, but it was rare when that would happen and just hear and there. We thought it was just something autoimmune because her primary only found a positive ANA and she sought out a rheumatologist who ran lots of blood work. most of her blood work came back good except for possible lupus, but they couldn't find anything else to prove that.
She would get a heavy feeling in her legs and arm and she described it as if her brain would go fuzzy like it wasn't sending messages right. But that would go away. she has lots of sleeping problems and is up a lot.
around 4 months ago she started to notice her body twitching and cramping. her thumb was actual the first to twitch way back when everything else started, but it has spread to all over. She has showed me and I can see them. At night she said its constant and she just feels like worms are crawling all in her. she also says her muscles burn at times like holding them up makes them fatigued easily and that doesn't seem to be all the time.
almost 3 months ago she told me her throat and tongue wasn't feeling right. She said she seemed like she was swallowing more often and like her tongue wasn't completing a swallow. she also described it as the tip of her tongue was pushing hard on palate to compensate for her base of tongue. She does sound groggy as well, but not all the time. She always complains that her mouth and tongue just feel so fatigued and not normal like she notices it there all the time because of its odd feeling.
When she started to feel the twitching is when she began to be concerned and after reading for myself I can see why. Once her tongue became involved she started looking at it. This is where it went all down hill. she noticed it too had some tiny twitches in it. Then when she sticks it out it shakes like it is tired and can see waves moving around on it. Of course she has me stick my tongue out to compare and that didn't make her feel any better when she noticed mine didn't move. She feels like she has lost her ability to swallow without making herself swallow. Her talking sounds fine to me but she ask me if she sound different because some words to her she says sounds and feels different. she has ridges on the side of her tongue which might be teeth indents.
I went with her to the neurologist and they did the pushing and pulling and she was strong. They did MRI which was ok and also did CT scans of spine. They did an EMG and they said it was clean and didnt show anything. They did not check her tongue because she didnt notice it shaking and twitching until after the emg. But during her emg they checked on the side of her mouth with the needle as well as back of neck, back and all extremities.
She seems to also run mild fevers a lot that are around 99.4-99.6. not sure if that a separate issue or involved.
This has been a rough year and so any ups and downs. she has set up to see a psychiatrist to help her cope with this and I am just trying to be there as much as I can. Her current neurologist said she can seek a second opinion if she wanted to although he didn't believe she had als. She made an appointment with them again because she wanted them to look at her tongue moving and they cancelled it and said they would refer her out for another opinion because the EMG was clean.
While researching myself through many different sites I have seen that people had clean EMG's. I also couldnt find anything else that would cause her tongue to do that. If they would kept her appointment and looked at her tongue I wonder if they would of had a different opinion. most recently she said she feels shaky.
Im sorry for the very long post I just didn't know where to turn to. Im sure I am probably missing out on some information as well
At first she started off just not feeling well and tired all the time, so she would take naps a lot but still feel tired. She would get this feeling in her arm as if it was feeling heavy or fuzzy which would come and go. she was just overall feeling ill. she would get lots of headaches and light headed all the time. she is light headed all the time if we are walking around. She feels like this fuzzy pressure in back of head
She had mentioned a few times in the beginning that she couldn't initiate a swallow, but it was rare when that would happen and just hear and there. We thought it was just something autoimmune because her primary only found a positive ANA and she sought out a rheumatologist who ran lots of blood work. most of her blood work came back good except for possible lupus, but they couldn't find anything else to prove that.
She would get a heavy feeling in her legs and arm and she described it as if her brain would go fuzzy like it wasn't sending messages right. But that would go away. she has lots of sleeping problems and is up a lot.
around 4 months ago she started to notice her body twitching and cramping. her thumb was actual the first to twitch way back when everything else started, but it has spread to all over. She has showed me and I can see them. At night she said its constant and she just feels like worms are crawling all in her. she also says her muscles burn at times like holding them up makes them fatigued easily and that doesn't seem to be all the time.
almost 3 months ago she told me her throat and tongue wasn't feeling right. She said she seemed like she was swallowing more often and like her tongue wasn't completing a swallow. she also described it as the tip of her tongue was pushing hard on palate to compensate for her base of tongue. She does sound groggy as well, but not all the time. She always complains that her mouth and tongue just feel so fatigued and not normal like she notices it there all the time because of its odd feeling.
When she started to feel the twitching is when she began to be concerned and after reading for myself I can see why. Once her tongue became involved she started looking at it. This is where it went all down hill. she noticed it too had some tiny twitches in it. Then when she sticks it out it shakes like it is tired and can see waves moving around on it. Of course she has me stick my tongue out to compare and that didn't make her feel any better when she noticed mine didn't move. She feels like she has lost her ability to swallow without making herself swallow. Her talking sounds fine to me but she ask me if she sound different because some words to her she says sounds and feels different. she has ridges on the side of her tongue which might be teeth indents.
I went with her to the neurologist and they did the pushing and pulling and she was strong. They did MRI which was ok and also did CT scans of spine. They did an EMG and they said it was clean and didnt show anything. They did not check her tongue because she didnt notice it shaking and twitching until after the emg. But during her emg they checked on the side of her mouth with the needle as well as back of neck, back and all extremities.
She seems to also run mild fevers a lot that are around 99.4-99.6. not sure if that a separate issue or involved.
This has been a rough year and so any ups and downs. she has set up to see a psychiatrist to help her cope with this and I am just trying to be there as much as I can. Her current neurologist said she can seek a second opinion if she wanted to although he didn't believe she had als. She made an appointment with them again because she wanted them to look at her tongue moving and they cancelled it and said they would refer her out for another opinion because the EMG was clean.
While researching myself through many different sites I have seen that people had clean EMG's. I also couldnt find anything else that would cause her tongue to do that. If they would kept her appointment and looked at her tongue I wonder if they would of had a different opinion. most recently she said she feels shaky.
Im sorry for the very long post I just didn't know where to turn to. Im sure I am probably missing out on some information as well
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