Possible mnd

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Cae77

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Good morning everyone and all due respect.
I've been haveing what I thinck is mnd symptoms for last 14 months
Muscle fasiculation
Cramping feet ,hands and little fingers
Constant sweet taste 24/7 in mouth for last 10 months.
Morning brain fuzzy headache .
Twitching face muscles and head muscles.
Night sweats.
Sweats once eaten hot meal or hot drinck.
Genral tiredness at midday.
I visited my neurologist in october 2020 for a full clinical work up and he found no muscle wasting or weakness , I asked him if he could refer me for a emg /nerve conduction test this was carried out at end of November 2020 , no evidence of mnd was found, since the symptoms have worsened, would it be advisable for a second emg test if the one in november was carried out to early.any advice is hugely respected and appreciated.

God bless

Craig
 

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affected

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Nope, definitely not.
Your best next move is to go back and talk to your doctor and discuss how to help you and what else could be investigated.
I think you have pushed this cart long enough, truly.
In fact, bringing this to the terminally ill is terribly disrespectful, please cease now.
 

Cae77

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I'm sorry if I've offended you affected , I have absolutely no intention of being disrespectful to the people who ave been affected by this cruel disease ,so my sincere apologies, I have never had health issues until this started , just trying to get to.bottom and find out what's causing it.

My up most respect and apologies.

Craig
 

Cae77

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Also the reason I posted this this morning ,is that at the time and date off emg test in November, I was takeing 10 mg amitriptyline daily , I'm led to believe this can effect emg test and show normal readings causing the emg to show no mnd.i.really hope this is not the case as I advised the neuro who did emg test a week before test that I was takeing amitriptyline, he never said anything.

Many thanks


Craig
 

Nikki J

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I do not believe that amitryptiline can mask ALS on emg. That would mean it healed denervation and if it did it would be a treatment. It does have an effect on postural tremor on surface emg which is a completely different thing What led you to think this?
 

Cae77

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Hi nikki

A big thankyou to replying to this .
I'm led to believe that it relaxes the muscles and nerves, I read something on a mnd web page , my emg was clear in November 2020, symptoms have worsened, I'm just wondering if a second private emg would show any difference 9 months later, I'm a gas engineer and my hands are cramping all the time when working.
 

Nikki J

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Relaxing muscles / nerves would have zero effect on the things that one looks for in an emg related to ALS. Zero.
if you feel symptoms that worry you of course see a doctor but the worry about the emg is not valid. What the emg is looking for are signs of dead and dying motor neurons
 

Cae77

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Many thanks

That makes sense, I had extensive emg /nerve test in November 2020, this came back normal with no evidence of mnd,still have same issues 9 months later , would you advise on getting a second emg test done as a second opinion.

Many thanks and respect

Craig
 

Nikki J

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No I would advise seeing a doctor and following their advice after they have reviewed your history and examined you. Always best to ask what is wrong rather than do I have x disease. Also best to let them decide what tests are appropriate. As an example in a situation clinically different from yours we once had someone insisting their symptoms were ALS. We all said doesn’t sound like it and at least 2 of us suggested it sounded like a spine issue. They chased ALS and got an emg a month later. They subsequently had the spinal mri that probably would have happened right away if they had not insisted on an emg and ALS. That was the answer. It is fine to ask questions but trying to direct your own care is usually detrimental to your health. Dr google is no substitute for the real thing
 

Cae77

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Many thanks

So I should take mnd off the table, had 4 mri scans on brain and spine ,all clear , I'm just scratching my head and worried that it is mnd ,never had any health issues until all this started me and wife have been together 27 years and she knows something is wrong ,I ve had cameras put down throat all clear tested for autoimmune disese ,all clear and lymes disese all clear ,its the not knowing that's the thing, ,,dose it sound like mnd to.you.i.have posted my emg results at the top of this thread.

Many thanks

Craig
 

Nikki J

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You should let your doctor decide. Period.
 

Bestfriends14

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C,

I am going to be very blunt here: How many different ways do you need to be told that you do not have MND? 20? 30? Because you have been told NO MND many, many, many times, yet you seem obsessed with trying to get diagnosed with it. You insist on coming back time and time again, badgering terminally ill folks and their exhausted caregivers. Take a step back and ask yourself why you are compelled to do this. This is not rational behaviour at this stage, yet you do not stop. Why? It's cruel and self-absorbed to not see that this is inappropriate. Please be grateful that you do not have this beast of a disease and be on your way from this website. You have well passed the line of superfluous questions and posts. Good grief, just stop already. Enough. I have no idea what is going on nor will I hazard a guess. This is a site for those with MND and their caregivers, neither of which is you. Be grateful for this will you? Anyone on this website would give anything to have the physical health you have.

You no longer need to be here and that is an excellent thing.

Take good care and goodbye. I sincerely hope you find whatever it is you are looking for.
 

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You did not offend me earlier, but your continued pursuit of members here who do have ALS is very disrespectful.
Please stop and return to your doctor, only they can assist you. We have told you repeatedly you do not belong here, don't push it any further.
 

lgelb

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Craig, what you describe is clearly not ALS, with exams and tests backing this up. They won't change with a new EMG.

If anything, it's likely to be systemic. Amitriptyline itself can cause sleep disturbance, dry mouth, and such. You could be sensitive to it. Whether you are still taking it or not (which begs the question why you were taking it to start with), disturbed sleep can cause the kinds of issues you describe, so you could video your sleep and if anything is concerning, discuss a sleep study with your GP. Of course, some people are simply not getting enough sleep, full stop.

But you won't find the answers you want on an ALS forum. If this is worth pursuing, it's worth pursuing from the point of view of how you can make your life better, with medical assistance. If your fears are preventing this, it's time to seek counseling.

Best,
Laurie
 
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