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Beach61

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As mentioned in my previos post I am the Dx process.

I had my first nuero exam and she did basic stuff which indicated nothing serious.

When I mentioned the weakness in my right leg she checked for visual sighns of atrophy noting none. I have lost 13 pounds in 3 weeks! I have minor bubling feelings in the leg but they do not stay or last long.

She indicated that this may be a disk issue and ordered an MRI. My PCP has ordered a bunch of blood tests.

So as I sit waiting for my MRI, I wonder should I push for an EMG or should I wait for the process to play itself out?

Since an EMG is a very definitive I will know if I have a good possibility of having ALS!

If it's clean I can proceed knowing that it is not likely to be anything terminal.

My wife thinks differently. She thinks that if it's ALS then Sx will eventually be more prevelent so why worry untill it hits you

Any advantages of knowing sooner than later?
 

brendapals

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beach,
RELAX.

Any advantages to knowing sooner or later? well, who knows-there's really no correct answer to that question if you really think about it.

Now, have your MRI, don't count on an EMG ALWAYS being very definitive by the way.

Enjoy New Year's Eve,
Life's too short to worry about every little thing,
Just my own personal input,
-brenda
 

Phil M

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Don't get all worked up. In my case the EMG came after all the blood test. I think you have to have als for a while before the EMG can detect it.
Best not to worry about it right now. It could be a lot of things.
 

planningguy

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Promise you'll log off and try to enjoy the New Year celebrations? :)

If it makes you feel better, go ahead and have the EMG done. Although it is no a perfect guarantee, a clean EMG in an area with obvious symptoms should make you feel better, and is a good sign. An EMG can pick up certain problems long before you feel any symptoms.

Right now given the frequency you are posting, there is likely a lot of anxiety going on to match your symtpoms. Keep in mind that stress and anxiety can make symptoms caused for any reason (including beneign ones) worse. I know its tough, but there are a lot of much much more common causes for your symptoms, which are treatable.

Best wishes and happy new year,

Robert
 
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tmasters

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If it was me I would have the EMG done but that's just me. I tend to obsess over things and would need to know to put myself at ease. It may give some information, but if done too early before you have signs of chronic denervation it obviously can't detect them. There just isn't any way to screen this disease quickly.

I don't remember if you had any weakness but I wouldn't worry about ALS if not.

-Tom
 

CindyM

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My wife thinks differently. She thinks that if it's ALS then Sx will eventually be more prevelent so why worry untill it hits you

Your wife and I see things the same. I decided a long time ago to rule out anything treatable and then just wait for it to get worse. Still waiting, BTW, but now I figure it obviously does not intend to get much worse, so I'm good to go! :smile:
 

chris_uk

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If it was me I would have the EMG done but that's just me. I tend to obsess over things and would need to know to put myself at ease. It may give some information, but if done too early before you have signs of chronic denervation it obviously can't detect them. There just isn't any way to screen this disease quickly.

I don't remember if you had any weakness but I wouldn't worry about ALS if not.

-Tom

Interesting so you can get your EMG done to early? this is completely opposite to what people say on the BFS forum. I had mine done after 3 months of really bad twitching and i thought that after 3 months of constant twitching that an EMG would pick anything nasty up.

Chris
 

Zaphoon

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Chris,

The doctors that did my EMGs told me as soon as they were finished that I did not have ALS. At least, the symptoms that had presented up until that time were not caused by ALS. This is not to say that at some point in the future, I won't have any lower motor neuron trouble (which is one thing the EMG picks up).

Anyway, the fact that my EMGs were clean when symptoms were active was very much a relief and reduces the likelihood that any of what I'm experiencing will ever turn into ALS. Now, we just have to rule out PLS, MS, MMN and everything else until we finally find my "pinched nerve".

When we find that, we'll simply "unpinch" it and movement and muscle will return once again!

Cheers!

Zaphoon
 

Blizna

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From what I know and was told by many respected neurologist (and you can include MedHelp answers):

EMG will detect ALS if symptoms are present and if done properly - at least in 3 limbs. If the EMG is really clean and you have twitching, then you can feel safe.

There are exceptions - bulbar ALS, in that case EMG is often clean at the beginning...EMG detects only lower motor neuron damage but ALS can start with upper motor neuron damage, in that case EMG will be clean too. I feel to say that lower and upper motor neurons have nothing to do with upper and lower limbs :)

BTW, I have 2 clean EMGs, twitching for 1,5 years and still not believe Im clean. I know Im stupid, but I understand all people who are undiagnosed here..
 

CindyM

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I think it is hard to believe because neurology is such an inexact science. I kept waiting for something bad because, first of all, The ALS clinic promised ("Promise" was his exact word) that I had a less-threatening disease "like MS." He was so confident that the lumbar puncture would show MS, and when it did not I started to lose faith in him. Then the local neuro, who suspected ALS, downgraded his suspicions about 9 months ago. But this was at the time they were picking up decreased respiratory function so I did not have much faith there, either.

I finally came to my own conclusions after comparing my symptoms to PALS I met when I first joined, some of whom have since passed on. Obviously, I am OK. :D:D
 

planningguy

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Chris_UK - Certainly not an expert, but I think the reason BFSers rejoice at the clean EMG is that in cases where fasiculation is caused by motor neuron damage it is a lower motor neuron symptom. So if you have widespread twitching and getting clean EMGs in affected areas, that is a good sign.

NOTE: Since it can be caused by some many different things, twitching is not considered part of the El Escorial diagnosed findings for ALS. LMN clinical findings are progressive weakness and atrophy that cannot be explained by another disease process.

As mentioned earlier in this thread the clean EMG too early in ALS refers to cases of where the start of the disease is upper motor neuron related. In that case the clinical symptoms would be hyperflexia, spasticity, cramping etc.

I guess what I am trying to point out is that I think sometimes when we hear of cases where someone has a couple of clean EMGs then is later diagnosed'ed with ALS, people can be very quick to assume that an early EMG is nearly worthless. In almost every case I have ever heard of where nothing is picked up in early EMGs (And I admit my experience is limited), there were other symptoms involved that pointed to UMN involvement.

Yes, there are extremely rare cases where this is apparently different. However, when you start stacking the probabilities of someone in their early 30's whose first and practically only symptom is muscle twitching having multiple clean EMGS later diagnoseded with ALS you start moving into Powerball winning territory pretty quickly. In fact, some might even go so far as to speculate that in those cases the individual had BFS and later developed ALS, and just had really really crappy luck.

Me I'd buy the lottery tickets first. My clean EMGs in the face of twitching and weakness have been a source of comfort for me. You can pick at the thread and unravel the sweater, but then you have no sweater in January when its 10 degrees outside.

Best wishes,

Robert
 

wright

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Nicely put Robert. Let see how many people read it and then choose to ignore it or not understand it, even though you stated it so clearly.
 

chris_uk

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that made me feel tons better......i dont just have twitching as my only symptom however, my right leg also aches now when i walk anywhere, but this could be explained by trapped / irritated nerve i guess, as when i went for my EMG and had the nerve conduction test, i was told that it was slow in the right leg.

Thanks again for that post..

Chris
 

Beach61

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When my symptoms started 3 weeks ago it was like nothing else I ever felt! Typically you have some idea of what is wrong based on life experiences or your are in the ER with someone telling you what happened.

This is more sinister. Unless you have obvious symptoms ( slurred speech, cant walk, dropping things, can't swallow etc.) No one really knows what is going on except you are feeling these nasty things and can't explain.

I was not able to get to a Doctor immediately after my symptoms started so part of my problem I google diagnosed. At first I thought I had MS as a worst case scenario. I never considered ALS. When I talked to friends and family they just said it was stress and that it will go away when I relax.

My symptoms are not going away they are evolving, up to last weak I had no fasics, now I have them daily although infrequently ( mostly in the evening). I had a feeling of heavy leg now I have a feeling of a weak leg etc.

Going to the doctors has not been much help because unless they see something obvious they can't really know, and ALS is so rare that it is not something they like to consider.

I thought I would get some relief after my Neuro appointment, but I did not despite her telling me that she does not think its ALS. The reason was that the types of test only pick up on obvious symptoms. For example unless you are well into muscle atrophy the strength tests do not tell much. While I understand that reflex and the Babinski test can be more of an indicator, I have read about many people passing these tests and still getting an ALS diagnosis.

So now instead of weakness in just my right leg, I am experiencing weakness in my right arm. I have numbness all over. I am experiencing some swallowing issues but it is too early to tell if its real or psychosomatic. I can not see any atrophy but I am a big muscular guy.

So I go down the process, Monday blood tests, Tuesday MRI review with my Neuro......after that who knows?

I just want my old body back!
 

wright

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Beach61, you're another one that simply won't listen.

ALS does not hit you over the head in a matter of 3 weeks and certainly wouldn't move from one limb to another in that time either. Global numbness is not a symptom of ALS either. I'm a big, muscular guy and my muscle atrophy couldn't have been more obvious, so I'm not sure what that has to do with anything (it's actually more obvious when you're muscular). You have already been told all of this but for some odd reason, you won't listen.

Stop reading all of the crap on the internet that you are clearly not qualified to interpret. Go relax and let your docs figure out what is happening to you. Right now, I wouldn't be worrying about ALS at all, because NOTHING you have stated points toward it.
 
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