Continuing to Slide

[Guest]

Distal muscles are muscles out on the ends of your limbs, like in your hands and feet. It also would probably include calves and forearms. Think distance --> distance and proximal --> proximity (near).

There are lots of peripheral neuropathies that could cause denervation in your extremities -- diabetes being one of the leading causes for that, but there are other causes, including vascular problems and toxic substance exposure. It also can be a side effect of certain medications, although problems with the sensory nerves are usually noticed first. You might want to do a few 'Net searches for that.

 

[Guest]

wouldn't those things show on the NCV?

Still trying to understand how this could just now be showing on the fourth EMG in nine months. The others were clean in January, March and July. The last two were done at an ALS Center?

 

[Guest]

wouldn't those things show on the NCV?

Some types of nerve damage show up on one test and not the other. Some types show up on both. That's what we pay the specialists the big bucks to study and to identify.

Still trying to understand how this could just now be showing on the fourth EMG in nine months. The others were clean in January, March and July. The last two were done at an ALS Center?

Because it may be something new and unrelated to all your previous problems -- a recent injury, perhaps. Or maybe it's one of those "matters of interpretation" for something borderline -- the Mayo clinic neuro calls them "large", while the ALS center neuros don't agree with the Mayo guy. It happens. Both sets of doctors agree on one thing though -- you don't have a MND. That should count for something.

curtrill, there comes a time when you've got to stop second-guessing the experts. Maybe this is that time for you, at least where the neurological branch of the medicine tree is concerned. You've had more than one neuro tell you that there's nothing neurologically wrong with you, that your fasciculations are basically benign and there are no neuropathies present that would account for your other symptoms. Maybe it's time to look at other avenues like metabolic disorders or even simply treating each symptom individually, rather than looking for some grand unifying scheme to tie everything together. A little help in coping with your anxiety and stress issues might go a long way toward making you feel better as well.

Honestly, you're the one that needs to start looking outside the box and blinders you've placed on yourself. And nobody can do that for you but you. The neuros can't do it because they have no evidence that will convince you -- even though that lack of evidence ought to be a bright red waving flag for you. They tell you that the glass is empty and you complain about the dust on the side of the glass. How are they ever going to get across the goal line if you keep moving it just because they aren't giving you the only type of answer you've decided you'll accept, regardless of whether the facts support it or not.

It's time to give some other specialists (and some other conditions) a look. Way past time.

 

[Guest]

This most likely explains your situation (please listen):

Evidence of denervation in an EMG (PSW's and fibs) takes time (up to weeks) to show-up. Therefore, the reason your intial EMG's were probably clean is that the denervating process that occurred (I know that it occurred because you now have evidence of reinnervation) had not occurred yet or the EMG was done too early to catch it or the EMG was done too late to catch it. Why too late? As soon as a muscle reinnervates, the evidence of denervation (again, PSW's and fibs) disappears, unless the process of denervation is progressive (your's obviously isn't, which points away from ALS, if you were wondering).

Evidence of reinnervation in an EMG (large MUP's) takes months to show-up. Therefore, what caused your denervation only caused it for a short period of time and your initial EMG's (as I stated above) simply missed it. Your latest EMG was done long enough after the denervating process to finally show the evidence of reinnervation.

If you are still asking why you don't have ALS (I know you are): With ALS, the denervating process is ongoing, so someone with ALS will have PSW's, fibs and large MUP's in their EMG . . . and . . . it will be in multiple areas of the body. Furthermore, even if someone has these findings, it wouldn't necessarily mean they have ALS; it would have to be correlated clinically and it would have to be progressive.

Your EMG is not even close to the EMG of someone with ALS . . . your clincal exam isn't even close to someone with ALS . . . your progression (or lack thereof) is not that of someone with ALS. Ergo, the reason your neuro was absolutely sure you do not have ALS is because THERE IS ABSOLUTELY NO EVIDENCE YOU HAVE IT . . . NONE . . . NADA . . . NIHIL.

Now be done with this.

P.S. If someone comes back with . . . "my clean EMG might have been done too early to detect ALS" . . . I'm going to shoot you. Read what I wrote again if you have that question in your mind. Furthermore, with ALS, the denervating and reinnervating processes have been ongoing for a long time . . . much longer than anyone would realize via clinical symptoms. Therefore, the EMG of someone with ALS would have PSW's, fibs and large MUP's from the very beginning.

 

[Guest]

Wright

Thanks for the detailed response. May I ask you a question?

I know that fascics may or may not be detected on EMG. I guess because they are spontaneous.

Are fibrillations and psw's spontaneous as well or are they always present for the EMG to pick up?

Thanks for your thousands of hours helping on this forum.

Curtrill

 

[Guest]

Yes, spontaneous activity in an EMG would include fasciculations, PSW's and fibs (they will not escape detection . . . I assure you).

 

[Guest]

My spontaneous fascics have not occured during EMG. I know I have them. How are the fibrillations and psw's different? Can they not occur during the EMG also?

 

[Guest]

I have done exhaustive searches of peer reviewed journals & even had dialogue with the authors of studies concerning fascics, cramps, EMG criteria, etc. My neuro is one of the authors of the Awaji Criteria for diagnosing ALS. All my research and feedback is in agreement that having fascics that are visible, but are not picked up on EMG is a good thing. I know Wright is the expert, so I defer to him on the reason.

 

[Guest]

hi curtrill.
have you been checked for fibromyalgia? if so get checked again.

fibromyalgia has many symptoms like pls but without the neurological signs,these are...........
muscle fatigue
muscle spasms and cramps
stiffness
and mucle damage called microtraumas..........these are small micro-scopic tears in the muscle tissue effected.
any of these symptoms could cause benign fasics.

fibromyalgia can be very disabling but its not degenerative.

your pathological tests and clinical exams have been normal therefore you need to look at benign mimic disorders...........to me fibromyalgia seems to fit.
if i was you i would get a second opnion with a rehumatologist.

 

[Guest]

I have been checked multiple times for fibromyalgia and been told I do not have it ..... most recently at mayo.

 

[Guest]

TRFogey

I asked the neuro at mayo if there were any other specialist I should see and he said no.

 

[Guest]

Re-read Wright's prior comments. Fibs & Sharp Waves happen continuously after nerves are damaged and die. The fibs and sharp waves are the result of new connections being made between the muscle and the remaining nerves. Once the new connections are made, the fibs and sharp waves stop. The remaining live nerves are connected to more muscle fibers than a "typical" nerve, which is why the MUPs are bigger for the surviving nerves. Something made some of your distal nerves die and then new connections were made, but that something stopped. This puts you (and me) in the category of extremely not likely to have ALS. The big question is... what is that something? It's a waiting game, but it's comforting to know that it is very very unlikely to be ALS or other MND variant. I sent my EMG results to the author of the Walton Center Study (that scarey one that said cramps & fascics how benign?) I also sent video clips of my continuous fasciculations. He immediately replied that since my fascics were not detected on EMG I am totally OK. That was very comforting.

 

[Guest]

curtrill,you have an answer for everything.
fibrimyalgia is most ofton underdiagnosed,misdiagnosed or unfortunatly put down as psychological.

whatever.............you do not have a neurological condition,all your tests have shown that.
your neuro is right,dont waste any more time or money on a neurological quest.

if your stiffness and muscle spasms were caused by umn involvement then like me you would have a positive hoffmans,babinski plus clonus,hyperreflexia and clinical weakness on examination.

 

[Guest]

ps.........fibrillations and psw's will always show on an emg if there there..........and no you can not feel them as with fasics.

 

[Guest]

Olly

Once again I don't have much in the way of spasms. Just some light cramping in the left foot. Heaviness, stiffness, weakness in the limbs especially the legs/calves and loss of stamina are my biggest concerns. I get sharp stabbing feelings in the muscle if I over do it. Symptoms are always there and are only relieved by sitting or lying down. This has been progressive for 10 months now.