Is this ALS?

[Kiera's dad]

Hi everyone. I wonder if I might make use of the impressive depth of knowledge on this site. I am a 55 year old active, sporting man. I experienced random muscle twitching and calf fasciculations and was given blood and nerve conduction tests and an EMG. The result of the EMG wasn't good with "mild denervation" revealed in various places. The neurologist said there was nothing further he could do at this stage and told me to go away and come back in a few months. He said he can't be sure I have MND as I don't have any clinical indications such as weakness or atrophy.

Is that it? I was left up in the air and in complete shock. Surely that is not how this should work. Is it normal not to carry out further investigations or am I being naive?

In the two months since (that is four months since first symptoms) I have been in the gym every other day and increased my muscle mass and physically I feel fine, but the twitches and fascics are, if anything, slightly worse.

Did anyone on here experience similar initial symptoms? And is there anything I should be asking the medics?

Kiera's dad

 

[rose]

Hi Kiera's dad, I don't have any answers as far as if this is the expected route that neurologists take. From what I've read, there usually does not seem to be a sense of urgency with initial visits though. It is encouraging that you don't have any other problems associated with the twitching. There can be other causes for denervation than just ALS, that is for certain, these are treatable. Even possibly an old injury might show up on the EMG... there are many others active on here that can give you great advise and guidance. I started with bulbar onset MND, and have one hand that is affected slightly, so I'm really not much help as far as sharing how my progression has been and how it would relate to what you're experiencing. I hope you get some answers soon, and just try not to dwell on it. Life is what we make of it! take care :smile:

 

[happy]

Kiera's Dad,

I have had an emg that showed denervation and also twitching and calf cramps and weakness. I also have a neurologist that basically said that he cannot tell me what is wrong with me. (It's a rule out process) He guessed at a couple of things but could not say with certainty any one thing. I think that since you can still exercise that is a good sign and also that you can still build muscle. I am not sure you would be able to if you had als. Some advice: try not to dwell on every single symptom you find on this site, you will make yourself crazy. I know I did it for over a year. Like rose said, there are many other things that can cause symptoms like the ones you are describing, could you have a pinched nerve from squats or military presses? I am not trying to minimaize your symptoms but would hate to see you make your self crazy. This is just my experience. Good luck, stay peaceful.

 

[mjk201]

hi i also have kind of the same thing you have. i also get bothering twitches in my calfs and in other parts of my body. mine come when i'm just laying down or awhile after i work out. i lost 9 pounds in a month but i still can do my normal routine so that much i'm thankful for. and stressing out will bring them on too. cause everytime i think i get a twitch i think somethings wrong and bang they start all over my body. plus from what i've read on here working out and lifting weights just hurts the muscles even more if you have als.

 

[MtPockets]

Kiera's dad, Welcome to the forum. I'm sorry for the reason you had to seek us out.
I have Limb onset ALS, Dx May 11, 2006.

The only way to diagnosed ALS is the process of elimination of all other diseases. There is no one test that can tell Doctors you have ALS or MND. The reason your Doctor said to wait, is because "IF" it is a Motor Neuron Disease, then time will tell by the symptoms. It is something all of us here on the forum have come to know and to hate, that the only way to find out for sure is to wait and see what develops as far as symptoms progress.

One thing to look for is muscle weakness as a result of atrophy. Since you are building muscles that is a good sign that you may not have a MND. I know it is hard to wait while facing the unknown. I'm afraid that is the only way to find out for sure.

We are here for you if you have any questions or just want to vent.

 

[raob123]

I had a similar condition in the late 1990s and I was diagnosed as ASL/MND victim in 2004! An MRI and some expert advice from an ALS specialist will help. Generally they see where the brain cells have died and you need an expert's advice because this is not easy to detect.

 

[laurel]

Hi everyone. I wonder if I might make use of the impressive depth of knowledge on this site. I am a 55 year old active, sporting man. I experienced random muscle twitching and calf fasciculations and was given blood and nerve conduction tests and an EMG. The result of the EMG wasn't good with "mild denervation" revealed in various places. The neurologist said there was nothing further he could do at this stage and told me to go away and come back in a few months. He said he can't be sure I have MND as I don't have any clinical indications such as weakness or atrophy.

Is that it? I was left up in the air and in complete shock. Surely that is not how this should work. Is it normal not to carry out further investigations or am I being naive?

In the two months since (that is four months since first symptoms) I have been in the gym every other day and increased my muscle mass and physically I feel fine, but the twitches and fascics are, if anything, slightly worse.

Did anyone on here experience similar initial symptoms? And is there anything I should be asking the medics?

Kiera's dad

Hi Kiera's dad,
You should consider getting a second opinion. My husband had similar results from EMG testing back in 2002 or 2003. He was told it was nothing to worry about and to come back if things changed. By 2005, he had major atrophy of his right hand and was told he had carpal tunnel. He had surgery and continued to atrophy. Finally saw the second neurologist in 2007 and was diagnosed with CIDP MADSAM variant. Started IVIG in the Fall of 2007, but by that time he had worse atrophy and foot drop. He is doing much better since starting the IVIG, but he has lots of residual damage due to lack of treatment that he could have started back in 2002. I regret not pushing for a second opinion after that first visit. By the way my husband was around 54 yrs. of age when this all started and he had the muscle twitching in his right limbs. Get a second opinion with a neuromuscular disorder neurologist!
Laurel

 

[patricia1]

Building muscle is possible on the muscles that are not effected yet I went to the gym for five years before I noticed weakness because the muscle involve with me was bulbar.
What I did notice was muscle pain after working out
So maybe your wrist were always thin and you never noticed until you started worrying you had something. If there were atrophy you would have weakess in that area.

Pat 1

 

[Kiera's dad]

Many thanks to you all for taking the time to reply. Your input is much appreciated. I have spent a lot of time recently researching and discounting possible diagnoses and each time I come back to ALS.

raob123, I would very much like to hear how your symptoms progressed following the initial fasciculations.

Love
Kiera's dad

 

[hopingforcure]

I realize that this is the most ocmmon question asked.. So guys here it goes. With Atrophy comes weakness, it is that simple, if you have atrophy you will have some weakness, it will be clinical weakness, not perceived. It is so simple but so hard, but ALS causes atrophy and weakness. If you do not have those, at this day and time, you do not have ALS... Could have it later, but not now.. Hope that helps a little.

 

[lhagsjr]

Hi Hoping!

but the million dollar question is, What if you have fasiculations + severe atrophy but no weakness(either clinical OR perceived)?

 

[hopingforcure]

If you have atrophy you would have clinical weakness. No weakness NO ALS

 

[lhagsjr]

Atrophy

I definitely have it. I have measurements to prove it. im not stupid.

however, im lucky. as of now i have no weakness that i can tell.

why do i have atrophy with fasics but no weakness. that is the 10000000000000 question...

 

[mamaoftwo]

Lou - i dont have my diagnosis yet but i presented initially with fasics and atrophy w/out any real weakness. Now 2 yrs later, i do have weakness so i guess it is just another part of the waiting game. And remember that i am not alone in this, nor are you. There are other members here with atrophy/fasics and weakness but no diagnosis yet. When was your last EMG?

 

[lhagsjr]

EMG's

March 2007

June 2007

Nov 2007