ALS For support and discussion of Amyotrophic lateral sclerosis (ALS), also referred to as "Lou Gehrig's Disease." In memory of BobbyB.


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Old 06-10-2020, 03:49 AM #1
1234ig 1234ig is offline
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1234ig 1234ig is offline
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Join Date: Jun 2020
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Default ALS worry

Hi all
Thank you for letting me join the forum.
I am extremely concerned about als.
I started all over body twitching in November and it has settled down alot more recently. I will say that i was diagnosed with multiple sclerosis in 2018.
I have seen my neurologist at the end of January for my ms checkup and mentioned to him about my twitching, whereby he examined me and carried out neurological exam, he said the twitching was benign. I had, what I thought was speech issues too, but again said my speech was fine.
Not being reassured and with other things going on i had a follow up consultation by phone, with my neurologist at the end of april, telling him about speech, and he said he could hear nothing wrong. No one else has pulled me up on it but i can hear its not right, keep tripping up over words and cant pronounce some words, if i slow down i can say it ok.
Now my next thing is that i can feel a tightness in the roof of my mouth and has sent me into a spiral of worry. I am in the UK so i called the MND Association and mentioned this and i was told this is a symptom!! So im freaking out now and worry about what to do!! I do not cough or choke when eating or drinking but im worried this feeling in roof of mouth is the beginning or something.
Sorry for the long post, thanks for reading, any replies much appreciated.
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Old 01-21-2022, 12:00 PM #2
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MuonOne MuonOne is offline
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Confused sorry, only recently noticed post . . .

I only noticed your post a few days ago; in the United States there are medical doctors who specialize in Amyotrophic Lateral Sclerosis - in all likelihood there are some in the United Kingdom also (although the most similar prognosis is Motor Neuron Disease). Amyotrophic Lateral Sclerosis patients here will likely tell you if you are not talking with specialist you are likely wasting your time if you have Amyotrophic Lateral Sclerosis . . . same may be true of Motor Neuron Disease. The staff at the Motor Neuron Disease Association undoubtedly know the symptoms . . . while some correlation exists between the symptoms you have mentioned and those of Amyotrophic Lateral Sclerosis, alternatives remain possible. I strongly suggest you obtain appointment with motor neuron disease specialist in the United Kingdom and facilitate their independent appraisal.



let us know what develops!
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