Worried possible mnd

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Eddie1971

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Joined
Oct 24, 2021
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Reason
Learn about ALS
Diagnosis
00/0000
Country
UK
State
ST
City
STAFFORD
Good day

I'm a 50 year old male , living in uk, fir the last 13 months I've been worried about symptoms of mnd, I started to have all over muscle twitching followed a few months later by swallowing problems, I visited my gp who reffered me to a neurologist, he carried out a full clinical exam , this was all normal , I then had a extensive emg/ncs study carried out again all very normal
I came away reassured, this went on for 8 months , I then had a video barrium swallow test
A hiatus hernia was found with a bit off acid reflux, but the ent consultant also found that the hypopharynx and pirifossa muscles went opening correctly, he advised gaviscon, the muscle twitching carried on and involuntarily swallowing, I then had a private emg at a university hospital in Birmingham, again this was extensive, on all four limbs, and under my chin, all that was found was a few occasional fasiculation on the calf muscles , I asked the dr what this meant , he said its beignign ,as there is no other findings, he said there were no signs of mnd and to relax , since then I have had covid for 6 weeks , gp was checking me over last week as I'm suffering from what looks like long covid and he noticed muscle wastage on my left forearm , I'm very worried now , especially with the on going swallowing issues , I'd like to add that ive had nasal drip and thick secretions in back of throat for last 13 months and a continuous mettalic taste in mouth, my concerns is this a form of mnd , I'm just a normal working family man ,and not one to moan about a few aches and pains or colds but this is really concerning me now.
Thanks to anyone who has the kindness to reply what this could be.

Kind regards
Eddie

Sorry I forgot to add , another one of the symptoms, sweating once I've had a hot drink or warm meal or if theres a slight temperature increase, mainly round the neck chest and elbow pits.

Kind regards

Eddie
 
Sorry you are having these concerning things happening Eddie.
I'm not sure why you are pursuing ALS when it has been ruled out multiple times, and you have 2 diagnoses that pretty much explain all the stuff you are experiencing.
I don't see ALS in any of your descriptions, and the long time frame with multiple clear clinical exams and EMG's only makes ALS as unlikely as it is possible to say.
Long covid is not a small thing, please take care, but let ALS go as your doctors suggest.
 
Covid can worsen pre-existing problems and certainly affect taste long-term. I would get a second gastro opinion on the hernia/reflux and ask that it be coordinated with the long Covid clinic or specialist. I agree that there is no reason to think of MND in this.

Best,
Laurie
 
Many thanks folks, would the throat muscles indicated by my ent ,the hypopharynx and pirifossa forma not opening correctly , of been picked up on the emg under the chin as it's a muscle issue, I cant make contact with him as he has covid aswell , is this the bulbar area.

Many thanks
Be
Eddie
 
The EMG would have picked it up. BTW ALS is not a muscle issue or disease, it is a disease of the brain and motor neurones.
Try reading this post we stand by:
 
Thanks affected , I thought that the throat muscles were served by the same nerve as the tongue muscle and maybe the emg should of picked it up ,I will be glad when the ent consultant is off sick leave ,maybe he can explain why the throat muscle arnt working.

Best wishes

Eddie
 
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