Mnd symptoms

[Edd]

Good evening

Would anyone be kind enough to offer a listening ear and a bit of advice concerning my current symptoms.

I'm in my late 40s , never smoked , and don't really drink , 12 months ago I started to get all over muscle twitching.
A month later I had a thorough clinical exam with a professor in neurology all was normal , I then had a extensive emg July 2021 at a university hospital , on a few fasiculations were found in calfs , neurophysiologist said no evidence of mnd , possible bfs.
At the same time I started to get a consistent 24/7 soury mettalic taste in mouth , gp said possible silent reflux.thus taste has worsened to the point my lips are sticky and it causes me to lisp my words , ppi was prescribed , these have not worked , I had a private acid reflux test carried out , no reflux.

November 2021 second emg carried out again at the same hospital, fasiculations found in calfs no other findings,no evidence of mnd .

December 2021 2nd clinical work up with a neuro muscular who is also a mnd consultant , he just found slightly brisk reflexes and thankfully no evidence of mnd

February 2022 , private emg at private hospital , the consultant teaches emg to medical students, fasiculations found in calf muscles and in tongue , I questioned it and he said no evidence of mnd , I felt he rushed it and was no where as thorough as the previous two carried out at hospital.

The twitching is constant and I can induce them by tapping sometimes,they stop when I'm exercising.i can walk on my tose and heels and do normal things I do not feel I have any weakness, I've got to have a hip replacement which I've known about for last 3 years , this is due to years spent doing ultra marathons and triathlon, the taste in mouth is chronic acid soury taste , I have read this presentation is a symptom of mnd , but I have a open mind with this .
Would the2nd emg in November picke up any muscle issues I have now.

I thank anyone for taking there time for reading this.

Best wishes

Edd

[JamesW]

Hi Edd,

Thank you for posting and I am sorry that you find yourself here concerned about MND.

With regards to your symptoms I would strongly suggest that you listen carefully to your neurologist as to what may be causing them. My advice would be to say that they are the experts and if they don’t think you have MND then I would take that every day of the week.

You also haven’t mentioned clinical weakness which would be another possible sign if they suspected MND.

As you have mentioned benign fasciculations are the most likely cause for twitching, the irony here is that stress and anxiety are often the cause of these fasciculations so I would really try to put MMD to the back of your mind if you can.

You may also find it useful to contact MND connect which you can do using the dedicated thread within this forum. They would be happy to discuss your concerns if you feel that’s appropriate.

Take care, James

[Ellie]

Have you posted before??? Your timeline is very familiar.

[Edd]

Many thanks , hi Ellie , I haven't posted before , I was in two minds to post , but here I am , am I worried over nothing , who knows, there is no reason I should have twitching in my 40s , I have read bfs only normally effects people in there 20s-30s , any twitching over 45 is cause for concern , this is in a British medical journal .

[Edd]

Thanks for reply James.

[Music man's wife]

My 30 second Google search never came up with much for the metallic taste you have, have you had covid? Could be a result of that.
The way I read it you've had 3 emg's with nothing of any note found. When my husband had his emg the whole room went silent and he thought it was something he'd said.
Anyhow if I were you I'd run with the results you have, as James says. Life really is too short.

[Edd]

Thanks, all the best

[Tony1973]

Hi Edd

you sound almost like me, late 40s too - i have pretty much the same timeline as you , with regards to mouth issues and speech,and taste, (and i feel like mine also has excess saliva) - stiff hands , especially thumbs... i also have seen private neurologists, 2 of them, plus NHS which was a long wait-
basically one day i woke up with tremors everywhere and muscle twitches, which scared me, i was diagnosed with bilateral essential (action) tremor - when i thought it was all settled mouth then the fasciculations started in my calfs, to combine with the body wide muscle twitching i still had, and total loss of energy and what feels like strength (although no sign of muscle wastage was noted by the neurologists) so i went back private and have recently had an EMG and awaiting results. (i've posted in this forum, which has turned more as a blog post tbh)
I've also seen an osteo and an excellent physio, and as i said the private Neurologists - pretty much all of them first asked "when was you last vaccination" - for me it was 6 weeks prior to it all starting (3rd dose), and in that 6 weeks, i suffered headaches and body aches, that i still have now - i tested weekly for covid and was negative.
i could cycle and run without issues , now i cant get the shopping in from the car without feeling like i've pulled some muscles, and then the twitching starts. my thumbs are terrible
when i google all the symptoms, it lead me to here - and now i wait and see consultants and then what results are and decide where to go next for answers

i've been it utter bits sometimes mentally and the GP has put me on anti depressants - something i didnt want, but i've also contacted the local councils mental health help services and start counselling / CBT this week.

i hope everything works out for you Edd.

[Andrew]

I've also seen an osteo and an excellent physio, and as i said the private Neurologists - pretty much all of them first asked "when was you last vaccination" - for me it was 6 weeks prior to it all starting (3rd dose), and in that 6 weeks, i suffered headaches and body aches, that i still have now - i tested weekly for covid and was negative.

Interesting the neurologists ask about vaccinations. I had my 3rd vaccination in March 2021 and my speech started to slur in July 2021. I asked the neurologist in the September 2021 if my issues could be linked to the vaccine but he said they weren’t seeing anything to indicate that could be the case. I was diagnosed with bulbar onset MND April 2022 having been misdiagnosed with anxiety and low mood prior to that.

[Edd]

Many thanks gents , my issues started after 2nd covid vaccine ,I really did not want vaccine as I felt it had not been tested enough , but me and wife have family living overseas ,so we had them to travel.people have died due to vaccine , these are fit healthy people with no health issues.

[Ellie]

November 2021 second emg carried out again at the same hospital, fasiculations found in calfs no other findings,no evidence of mnd .

What a coincidence, Craig was there too.

Cae77 Nov (2).png

Do you know that over half the people who took the trouble to reply to that thread are now dead…

[Edd]

Sorry Ellie , nothing to do with me.

[Edd]

Hi
ive had a barrium swallow test , it's identified bilateral hypopharynx weakness also had manometry swallow test this identified esophagus inaffective motility due to this gp ordered emg at hospital ,this was carried out 11 days ago , I have all over fasiculations , emg consultant who has over 30 years experience in emg said provisionally it's not mnd ,but I have to my report and look at the emg readings , o said all due respect Dr but do I need to carry on worrying about this , he said be reassured ,my report will be in the post .

Ent and gi consultant have said weakness is of unknown origin .

[Edd]

Hi
ive just had report back for emg carried out 5 weeks ago , it found mild chronic denervation bilaterally in the c7 ,s1,l5 territories, mild increased in polythasic units , increased muaps and reduce insertional activities in the calfs , deltoids , triceps , I've emailed the emg consultant , for the actual emg table of recordings , as this was only a written conclusion .

Possible longstanding nerve route irritation .
no.fassiculations evident on emg.

No objective evidence of anterior horn cell disease at this present time written on clusion.

Asked emg consultant what the clinical correlation of these findings mean.
He said ask your gp, I'm only testing and diagnosis.

Edd

[Zante]

I don't understand any of the above so am afraid can't help at all. But am pretty sure no anterior horn cell disease would indicate not mnd.