Old 10-12-2017, 08:42 AM #1 (permalink)
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Default Hi. Yet another EMG. Could I ask some questions please?

So today another EMG. Findings essentially the same as six months ago. Low level psw seen in lower limbs. Neurophysiologist said 'still think neuropathy'. I will see head Neuro in a week for another clinical.

Going for me is 2 years of symptoms with fasiculations and mild denervation.Mild atrophy but no obvious clinical weakness.

Neurophysiologist says go back in six months.

Will this ever end?

Can I ask you kind people your thoughts on this progressing to mnd/ als please?

I would sincerely appreciate it.

Thanks

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Old 10-12-2017, 08:55 AM #2 (permalink)
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Default Re: Hi. Yet another EMG. Could I ask some questions please?

If you are going to see the head Neurologist in a week, why are you asking us? We are not Medical Professionals. Think about it, if we say one thing and he or she says the opposite, who do you believe?
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Old 10-12-2017, 09:04 AM #3 (permalink)
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Default Re: Hi. Yet another EMG. Could I ask some questions please?

Fair point Al but I have always valued you guys opinion
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Old 10-12-2017, 09:45 AM #4 (permalink)
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Default Re: Hi. Yet another EMG. Could I ask some questions please?

I would, to be honest, value your neurologists opinion. 80 something posts in nearly two years doesn't hold that you truly do value those on the forums opinion. You continuously come back asking the same questions and receiving the same answers (I read through your exhaustive list of posts), yet because you keep coming back with the same questions, you're perhaps not getting the answers you seek.

Maybe it's time to focus on what your neurologists (4 different ones at this stage, all with the same conclusion), and take their very educated, medical opinion.

Good luck in the future. You do not have ALS, for which you are truly blessed. Relish that and be grateful.

Take care
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Old 10-16-2017, 06:29 AM #5 (permalink)
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Default Re: Hi. Yet another EMG. Could I ask some questions please?

Thank you.I obviously I pray you're right and truly appreciate your time.I will if i may come back after my neuro appt in a few weeks and tell you the outcome.

Thanks again

Sid x.
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Old 10-17-2017, 06:01 AM #6 (permalink)
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Default Re: Hi. Yet another EMG. Could I ask some questions please?

So saw the Neuro with the following results of my EMG.

Fasics in lower limbs were 2+.

PSW 2+ in lower limbs including feet indicating ongoing denervation.

Above knee level no psw or fibrillations..

No fibrillations anywhere.



On Ncs were reduced sural nerve conduction in both feet.


CMAP amplitude remains unchanged.

Again Neuro says 'Mnd cannot be completely ruled out' but sensory /motor neuropathy is likely as basics and psw have not advanced above knee level.



Could anyone interpret these emg findings a little better for me?.

I know I have the Neuro verdict but I'm still apprehensive and would welcome some opinions from you guys please?

thanks

Sid.



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Old 10-17-2017, 07:56 AM #7 (permalink)
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Default Re: Hi. Yet another EMG. Could I ask some questions please?

Sidney, he is saying what they all have said, ALS is not seen, if you keep insisting on more appointments you will keep getting the same results. Sorry Sidney but it just seems that is the way it is. I think it is the results you should be looking for, it maybe could be better, but it could be a hell of lot worse. That is my opinion.
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Old 10-17-2017, 08:14 AM #8 (permalink)
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Default Re: Hi. Yet another EMG. Could I ask some questions please?

Thanks Al. To be fair I don't ask for the appointments . They want to see me to see if there's progression.. I agree with your could be worse could be better assessment but this bloody limbo land isn't easy although I appreciate its a hell of a lot better than a definitive als diagnosis. Thanks again. Sid.
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Old 10-17-2017, 08:40 AM #9 (permalink)
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Default Re: Hi. Yet another EMG. Could I ask some questions please?

Have you asked if there is a point in time when they say ok this is the diagnosis? It seems as if you have been stable on emg for a while. Are they going to do this for another year? 10 years? Forever?

Alternatively can you get a second opinion? Even if it means going private? I do understand limbo is very difficult. I am not clear why, if your results are consistent with a motor sensory neuropathy and have been stable , why that is not your diagnosis.

Sometimes it is necessary to follow things of course but perhaps if you knew the neurologist's thought processes better you would be less stressed
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Old 10-17-2017, 09:55 AM #10 (permalink)
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Default Re: Hi. Yet another EMG. Could I ask some questions please?

Good point Nikki. I will schedule another visit to ask questions. I think their reticence to commit is the progression issue.What freaks me is the' we cannot completely rule out mnd'. I am however at the best centre
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Old 10-17-2017, 10:05 AM #11 (permalink)
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Default Re: Hi. Yet another EMG. Could I ask some questions please?

Sid,

They are reticent to commit because of ethical issues; my doctor would say the same thing to me. He can never take off MND from the table because he can never say never.

You are the one who brought these issues up to the docs in the first place and therefore, on ethical grounds, they are obligated to follow up with you periodically to monitor symptoms. Not because you have MND. Your several EMGs have shown that. You really need to let this disease go and follow up for what they suspect you have.

You do not have ALS. Relish that and be grateful.

My husband, who is nearly two decades younger than you, will most likely not live to see your age. You are very blessed to have health and longevity. Relish that and be grateful.

You do not have ALS. Relish that and be grateful.
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Old 10-17-2017, 11:43 AM #12 (permalink)
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Default Re: Hi. Yet another EMG. Could I ask some questions please?

Many many thanks for your kind words. My heart sincerely goes out to you and your husband it really does. I have seen many als patients at clinics and you are the bravest of the brave. I am actually helping in a clinical trial which I hope may help edge towards making patients life easier. It's the least I can do
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Old 10-17-2017, 01:07 PM #13 (permalink)
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Default Re: Hi. Yet another EMG. Could I ask some questions please?

Sidney, I don't comment here much anymore unless one seems that no answer from very knowledgeable members will suffice.

As you first wrote in this thread...

"So today another EMG. Findings essentially the same as six months ago".

I suspect you're hoping for another EMG.

Einstein said,

"Insanity: doing the same thing over and over again and expecting different results."

As another knowledgeable member wrote... "you don't have ALS".

Of course as you persist for more appointments the Neurologist will go along.
These tests are not free and his/her time is well reimbursed . They get paid well to do all of it.
Every test and visit has a profit within the bill.

Let this ALS obsession go, following back to your first thread of 1/14/16. Best wishes.

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Old 10-17-2017, 02:44 PM #14 (permalink)
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Default Re: Hi. Yet another EMG. Could I ask some questions please?

Thanks for taking the time Al. I am actually on the national health service here where incredibly the very best mnd doctors are free. I really don't question their motives at all.Theyre amazing.

The fact you and others don't see Als is a huge comfort. I promise you I really really am not 'chasing' the disease as I've seen others on here do

I'm in limbo with no one ruling in or ruling out mnd and I'll be frank for two years it hasn't done my mental health any good at all.

I'm not bleating. I know how devastating als/mnd is and I marvel at your compassion taking time to help people like me.

Cheers . You guys are both admirable and inspirational. Thanks

Sid
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