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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
 
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Hi, Joel, does not sound like ALS but does sound like something that merits diagnosis. Have you been to Baylor or UT? Is there an internist involved? It all sounds more systemic than neurologic.

Best,
Laurie
 
I am honostly so surprised on how she has been treated by some of these doctors. I have started to go to these appointment with her and still can't believe they way they brush her off. She is seeking another opinion at UTSW in Dallas, but unfortunately they can't get her in until Novememer 23rd. This is a long time for her to wait with how scared our whole family is. We were told when tongue is involved it's neurological. I couldn't find anything autoimmune that would cause the twitching and tongue fasciculations. The last neuro did some blood work and checked achetocholine receptors for Myesthenia Gravis but that came back good.
 
Would bulbar ALS present in the tongue like this along with the body twitching? I probably should have asked for opinions in my original post. I have just seen so many different stories with how people started with symptoms.
 
This would be prolonged onset for bulbar ALS, and unlikely to be missed by an EMG with the symptoms you mention. It really is not the case that lots of people are diagnosed with ALS following a year and a half of symptoms and a clean EMG about a year in(?) from that. The overall shakiness, fuzziness, naps and such are not the usual pattern.

While tongue twitches can be neurologic in origin, symptoms such as pain, dizziness, fuzziness, etc. are often caused by systemic illness. Have you had a headache from the flu, for example? That was my point.

At any rate, if you don't get an answer from neurology, it's always a good idea to go back to internal medicine as that is the major diagnostic specialty.
 
These symptoms are identical to what I went through in January 2012 I don't know if the got better as I still get all these feelings but still found nothing a bunch of blood test clean emg I still talk and walk still can work doesn't know if it helps like you I thought ALS I wish I never read about twitching
 
Thanks for your response. I thought it would be prolonged as well since she started feeling weird awhile ago, but what was concerning was how things changed so suddenly to her throat/tongue and full twitching. When I got hom from work last night she was telling me how she flexed her neck muscle and it was shaking really bad which is exactly what her tongue does when she sticks it out along with the fasciculations.she has also been complaining about Her hands feel shaky the past few days and weak like moving them quick is hard. I guess our fear is maybe she started with one thing and has now turned Into ALS or simultaneously running with ALS now. We have looked into other possibilities like Parkinson's, ms... but those don't specifically say full. It's fasciculations, tongue fasciculations, cramping
 
Hi Joel,

Your wife had a clean EMG. Whatever is wrong, be thankful because it's not ALS. When I came here, no one said that my husband's symptoms did not sound like ALS. We all knew they did. All the best in finding answers.
 
Thanks for your response. She saw a rheumatologist today and the dr saw her tongue fasciculations and said Autoimmune wouldn't cause that so she is even more scared now. She is literally in the bedroom crying right now. Aside from how things started the things she is going through today and everything I read sounds like bulbar ALS so I fear for her.
Does anyone know how bulbar would present and what about her symptoms doesn't sound right?
Trouble swallowing at times, tongue fasciculations that aren't just hear and there. They are like constant waves and full body ones, cramping, every swallow to her feels like tongue is not right, when she wakes up in morning her tongue is stiff from sitting there all night.
 
I am sorry she is so scared, and I so know what it's like to fear so much for someone you love. Don't guess a diagnosis. It does not sound like any bulbar I ever heard of, but follow up with the neuro and Internal medicine and get this sorted out.
 
There is no such thing as a "positive" ANA (I've had several >normal myself) in the sense of, "Definitely this disease." So I wouldn't be disturbed that autoimmune disease isn't the leading contender any more. Maybe it never was. Because no, tongue twitches aren't usually part of it. But they are part of symptom clusters that numerous posters here have reported, that have come to nothing. And they emerged later in your wife's illness, so perhaps they are not the major issue. And there are other possible causes, from slow-moving neuropathies to infectious diseases.

I don't think anyone here considers bulbar-onset ALS the leading explanation for what you report, so please tell your wife that. Take her to the best internist in Dallas, and try to have an open mind. Was she tested for Lyme?
 
She asked her dr to be tested and the first time the ELISA was negative so they did not run the western blot. The second time she asked to just run western blot and no Elisa. Western blot was positive but according to the CDC she is not because you have to be positive for both. A Lyme literate dr would consider her positive so She is seeking out a Lyme literate dr but can't get in until December. She isn't sold on that because her tongue feeling weak hasn't subsided for even a second since it started months ago and her voice hasn't been normal. She is seeking out answers from many different specialist to run out everything she can, but deep down she is thinking ALS.
 
On her Facebook she joined a Lyme group but nobody there had tongue problems like her so it made her more scared
 
Don't get snookered by an LLMD (long-lasting money drain) -- I was just asking.
 
Still not thinking this is ALS but I think the whole Lyme thing is pretty much nonsense medicine. My opinion for what it's worth.
 
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