Causes ? ! New Emg ?!

[gillos]

Hello everyone ,

I havent been on this website for a long while and also for a good reason because,
I had a clean emg (twice) in a academical hospital.

The very first emg from almost two years(10/2009) ago showed denervation in my limbs.
Half a year later I went to a specialist who didn’t find anything.
Another half a year later I went for confirmation in another academical hospital and was cleared again.

Now .. another half a year later I am trying to pick up my life again , but I have been going backwards a lot.

I only get weaker and weaker in every muscle and have still an ongoing fasciculation party in my body.

One shoulder is getting even worse more quickly … you can also see a nice big indent line when I move it ( is that what they call atrophy ?).

Is demanded a new emg test( this Friday) because there is still something going on with my body… and also can’t still get over the ‘als’ scaredness.

Is it even still necessary to go get another check up ?

Is it better I go look for other causes or can it be a slow progression that doesn’t pick up on a emg too early?

I am not looking for answers like do I have “als” or not but more in need of a direction I should look to since the doctors just say … if I cant see it , its not there.

Thank you.

 

[tammyg]

Don't give up, you know something is wrong ,you feel it and know it. I know there is no test they can give you for ALS. With my dad it was like alot of testing and process of illimanation. THey did a spinal tap that ruled out like 350 other things. Good Luck, lets hope they are right for once.

 

[michael0314]

if the emg comes back negetive again it is not ALS. You seem to showing a lot more symptoms than I did at my first Neuro visit and my emg showed ALS if other tests came back negetive. (Pulled a gallon of blood for tests) They did and here i am.

 

[TedH5]

Having two clean EMG in the last year is a good thing as far as pointing away from ALS. Wait until Friday and hopefully you will have another EMG and will be able to rule out ALS. At that point you need to become your own advocate. Ask if they detect clinical weakness. Are there any blood tests or a spinal tap test that they are willing to do in order to check other possibilities. Stay away from allowing your mind to draw you to the worst case scenario when your last 2 EMG's point away from it.

 

[trfogey]

If ALS wasn't causing your symptoms a couple of years ago, it's very (extremely) unlikely that ALS is causing your symptoms now.

Is it better I go look for other causes or can it be a slow progression that doesn’t pick up on a emg too early?

There is no such thing as "a slow progression that doesn’t pick up on a emg too early" when it comes to ALS. If your symptoms had been the result of undiagnosed ALS all this time, you would be much sicker than you are now and would have returned to this forum a long time ago. Good luck on Friday.

 

[notme]

What did the first doctor say about the EMG results? So many post here and say what the report says--but nothing about what the doctors are saying.

Read 3 posts in this section and you'll have read that CLEAN EMG = NO ALS. After two years, if you consider the 1st EMG as being 'correct', then by this time, you'd have some major loss by this time. Read the Sticky Posts--lots of good information there.

If in fact there was a problem in 2009, it either corrected itself--or was a bad EMG (which is possible if an idiot did it--but how likely is that?)

If you are concerned with muscular weakness, then see a neuromuscular specialist. (Assuming your GP has ruled out the usual suspects, such as spinal issues and trapped nerves and Gillian Barre and Myesthenia Gravis, etc)

ALS would be very unlikely to begin in the shoulders--it USUALLY affects the distal regions (with symptoms) first. Hands and feet--then moves up--or Bulbar.

There are issues that can affect the shoulder--thoracic outlet syndrome is one of them--and it's hard to diagnose. If your symptoms seem to be in this area -- perhaps even consult an orthopedic specialist to see if there is an issue within the shoulder mechanism itself.

Also learn about weakness verses muscle tiredness/fatigue. Weakness causes an inability to do something you could do before. For instance, I used to be able to snap my fingers--I can't anymore--it's not hard, or tiring, it's impossible for me to do. I used to be able to write legibly, now I can not. I could open a jar, now I can not. See what I mean? (and LOTS of things can cause my issues other than ALS)

All that said--it doesn't mean that something isn't going on--but it sounds like you can very reasonably take ALS completely off the table. Never give up the perusal of a diagnosis if there are real ongoing and progressing symptoms--but don't think the worst if it's been effectively ruled out--as ALS should be in your case.


Good Luck

And--again--as said in the sticky posts--- TWITCHES are benign more often than not. Look up BFS.

Muscle fatigue can also be caused by deficiencies in the blood--a simple blood test should rule that in or out.

 

[Alyoop]

You should definitely get another review. The neurologist can tell whether your weakness is clinical, rather them stamina. Hopefully if they do another EMG, they will do your shoulder.

 

[gillos]

Well to give more information ...

I did go to a specialist I think. ( it was the neurological department at an academical hospital).

The emg was done back than in my foot, leg, calf, arm or shoulder.
It came all back clean. They only found fasciculations.

This is al one year ago and I only got worse.

I do admit ... i can still use every muscle .. i am just unstable and very weak in it.

If i use my upperlegs too much, it start to tremble and get very very weak.

Its hard to tell what the feeling is exactly ...

My hands and feet got very tin as well ( i dont know if this is atrophy or .... )

The only very visible thing is that i get in both feet a charlyhorse constantly and cramps in every single toe

 

[Alyoop]

Well that is fantastic news. You do not have ALS, what did the doctor say to you about other possible diagnosis? What is the Plan?

 

[gillos]

What they told me was to just trust your body again and start excercising again.
Without telling me what else i could do.

I went running for 12min 3 days ago.... for the first time in 2 years.

When I came back home and was stretching .. i almost couldnt bent tru my knees since my uppperlegs were so tired. The muscles were "shocking".

Today(3days later) I still feel very weak on my legs from that run.
No pain, no tired feeling .. just weak. But just a slight bit better than yesterday.

Its ofcourse normal that the docs then say ... this is just being not trained.

Is this possible still ?
Normally you recover by having tired and stiff muscles ... but weak too ?

 

[rose]

If you've not run in two years, a 12 minute run was probably overly ambitious. Maybe after you recover, you should start back with either a 12 minute walk, or say, a five minute run; working your way back at to where you used to be at a more conservative pace.

I can only tell you how I experience over exertion, as I have no medical background. If I stand longer than I normally do, for example, my legs start cramping that very day. By time I go to bed it turns into charlie horses. This muscle cramping goes on for several days after the event that caused it.

 

[gillos]

thats why i find it so difficult for myself as well to determine wether i need to continue seeking help or not...

i am in a struggle with my emotions since i dont know if it is caused by lack of moving or really a sickness...

 

[trfogey]

You've been cleared of any neurological concerns by the experts, so why are you coming back here for advice? The next expert you need to consult is a physical therapist who can help you design an appropriate exercise program that will allow you to get back into better physical condition without injuring yourself in the process.

Good luck to you.

 

[notme]

Another common cause of muscle fatigue with exertion is fibromyalgia--lots of issues with it. ALS is clear with clear emg-period. Generalized weakness can be an entire host of things--ALS not being on your list due to the EMG.