The longest week of my life

[esjcollege08]

Sound like ALS?

Started over a year ago with body wide fasciulations. No clinical weakness associated.
Fasciulations seemed to die down over the summer but have since returned.
In October, started to feel weird on my feet. Felt like I weighed more, felt like the ground was moving, felt like someone was pushing me along as I walked...still no clinical weakness. Could walk in my toes, heels, walk up stairs, do squats, no problem. Just seemed odd.
About a week ago, had trouble swallowing solid food. Could get the food to the back of my mouth, but had trouble initiating a gulp. I can still eat and drink liquids and foods, the back of my throat just feels weak. At the same time, I noticed my tongue fasciulations at rest in my mouth, which made me really worried.
Shortly thereafter, I had an EMG and NCS on both legs and my left arm, and it was clean. Tongue was also clean.
Since that EMG, my pinky and ring finger in my right hand have become considerably weaker. I can keep all the fingers on my left hand spread apart wi resistance, but can't keep my right pinky spread apart from my other fingers with resistance. The muscle on the pinky side of my entire hand contracts and relaxes on its own. It looks really creepy. I can tell that my right pinky is weaker when it comes to lateral movement, pinching etc. Toothbrush also feels more awkward in my right hand than before.
Fasciculations are still widespread but have seemed to become finer...(like water on a frying pan..just a constant buzzing) I also have very big ones mostly in my thighs that you can easily see.

Does this seem like ALS?

Is it normal for someone to have body wide fascics for almost a year, then have problems with gait, then swallowing, then right hand weakness without one of those body parts becoming considerably atrophied first? In other words, why am I getting symptoms all over? This is not ALS's typical presentation.

The tongue Fasciculations and the right pinky/ring finger weakness with the muscles contracting in my hand are what have me the most worried. I am now going to have an EMG NCS on my right hand...but meantime, does this sound like bad news? I know you can't diagnose me here, but you can help with the agony of waiting.

I am a 22yr old male...so I know it's rare, but not unheard of....I am really starting to lean towards yes...I just don't know what else it could be. I tested negative for myasthenia. Thank you

 

[ottawa girl]

On your most recent and previous thread, you mentioned you were seeing the neuro on Feb. 22.
Last week. 5 days ago.

What were you told?

 

[esjcollege08]

I was told that I needed an EMG. I had an EMg on all three limbs except for the one that has weakness, since I did not notice the weakness until after the EMG. I was told the EMG in tHose three limbs was clean.

This section of the site is called do I have als, so I'm asking, does it sound like I have als? That's the whole point of this section. My story has changed since my last post, so as of now, with the updated scenario I previously posted, does it sound like ALS? I of course listen to what my doctor says, but I am looking to PALS who have hands on knowledge to see if my symptoms match any of theirs. As anyone who has experienced the anxiety during diagnosis knows, the wait between results and visits is excruciating. Just looking to get as much reassurance as possible.

Thank you

 

[ottawa girl]

It's easier for we helpful PALS to follow your chronology of events, when a follow up questioni is on the same thread.

You had an EMG 5 days ago, and I reckon you had GREAT results. I suspect you are confusing clinical weakness and perceived weakness. Lucky for you, notme recently drafted another comprehensive post detailing the difference between the two. Clinical weakness doesn't happen overnight. In my case, it evolved over the course of some 18 months. In fact, I was unaware if it until the doctor detected it. He also identified atrophy I had not noticed.

So, the quick answer, in my opinion, NO, it doesn't sound like ALS. I can only presume your neurologist said the same thing. I believe you are also aware that someone your age having ALS are extremely slim.

If you do not trust your own physician, I fear there is nothing much we can offer in terms of reassurance. You need to muster the wherewithal to find it within yourself. If you can't, and there's no shame in that, please visit your GP. Explain your symptoms, concerns and fear of ALS and discuss the next steps. You'll be happier for it!

 

[notme]

HI

Elaine said it best--but my question is do you use a computer or a phone a lot? Is it possible you're pinched a nerve? Most with ALS first note an inability to do something with their hand or drop foot or slurring with speech. You have none of those issues.

The sensory issues and sensations you're describing also don't sound at all like ALS. ALS is hallmarked by progressive real unrelenting weakness.

 

[momap53]

I believe you've had responses from a variety of our members who have told you over the course of a year that it doesn't sound like ALS to us.
Neuros you've seen haven't thought it was ALS either.
How has the CPap been working for you? Or are you even using it?

 

[sadiemae]

No no no no and Double NO, it does not sound like
ALS. I actually D iagnosed my husband from internet information, but he had going on two years before going to the Dr. His sym toms were, not able to walk up stairs without help. Not able to open a bottle of water. Speech issues, sounded like he was drunk. Looked as if he had had a stroke. Big protruding belly.

 

[esjcollege08]

Thank you for your replys.

I'm guessing the weakness in my right hand had been present for some time now. I only noticed it when I started looking around my body for signs a couple days ago. It's not to a point where it really hinders me from doing things, but it's definitely noticeable when I try to push all my fingers apart with resistance. The muscles directly responsible for pinky movement and strength (on the edge of the hand) contracting and relaxing on their own is also very unnerving. Weakness + spasms...? I've heard that many people lose their pinky and ring fingers in their hand first, and then the rest of the hand goes. Maybe I'm just beginning to experience this weakness?

That with the tongue Fasciculations and the swallowing issues...I dunno. If its not ALS, it sure is too close for comfort.

I do type a lot, and I'm getting a cervical MRI to check for any pinched nerves. I use my CPAP almost every night. Have gotten pretty used to it. I still don't even believe I have sleep apnea but all well. And that's another thing, a lot of people with ALS have sleep apnea in REM sleep, which is exactly what my sleep doc diagnosed me with...

So as you can see, I'm not unjustifiably jumping to ALS. There are little tidbits here and there suggesting ALS, and other things that are not. Which is why I'm here trying to pin you guys down for info.

The biggest thing suggesting no ALs for me is the widespread symptoms. I have swallowing issues, balance issues (weakness in legs?), right hand losing strength, body wide Fasciculations, all at the same time. I feel like most people experience weakness in one spot of their body and it's very noticeable before it spreads to other parts of the body...in other words, by the time it starts to spread, you already know you have ALS?

I called my neurologist back and asked her about the weakness in my right hand. She said that an EMG and NCS in my left arm/hand would pick up ALS no matter where it was in your body. In other words, I don't need to get an EMg on my right hand.....I think she was just trying to get me off the phone because that doesn't sound right at all. Can an EMG anywhere on the body pick up signs of ALS anywhere in the body?

 

[ottawa girl]

Ok college guy. You are absolutely right. You probably do have it.

All the itsy bitsy tidbits are adding up to a huge conspiracy.

Your neurologist is just trying to make you feel better by telling you lies.
We PALS take time to one finger type lies to you too.

Just to make you feel better.

But alas, the jig is up. You got us!


As a good friend once said:

We can explain it to you... but we can't understand it for you.

 

[sadiemae]

Look for my thread entitled A must read if you twitch.

 

[esjcollege08]

Okay ottawa. I'm just trying to ask questions on a section of a forum that is dedicated to asking questions. If you dont want to answer them, dont, but dont belittle what im going through as nothing. Forgive me for fearing I have the worst disease anyone can be afflicted with. And I am terribly sorry that you do have it, I'm just looking for some answers to a couple questions, that's all.

 

[ottawa girl]

Asked and answered! Many many times over! I am not belittling, just mirroring back your own statements. If I was belittling, trust me, you would know. I have no inclination or time to demean people. Even you. Especially you. A young man with great potential.

Step back for a moment and consider this.

Do you really seriously think a neurologist would in any way, shape or form jeopardize her reputation and credentials, simply to get you off the phone? I think not. She answered your question honestly. We have repeatedly answered your questions. I understand these answers are not satisfactory to you. Why is that, do you think? You are clearly an educated and literate person.

Do you have any inkling and appreciation of just how unbelievably difficult it is for notme to even type the sticky to which you were referred? Did you bother reading it, and moreover absorbing it? Or can you not see or hear anything beyond your pinky?

Please, seek help for his unhealthy hobby/obsession.

You have your whole life ahead if you! Go live it, in the real world.
Time's a wastin'!

 

[esjcollege08]

I have read and re-read everyone's responses, and appreciate each and evey one of them, but they're telling me I don't have ALS without directly addressing the concerns that are leading me to ALS in the first place. Nobody is obsessing here.

I have three questions:

-can an EMG anywhere on the body, detect ALS anywhere in the body? My neuro told me an EMG on my left arm would detect abnormalities in my right.

-is it typical for multiple body parts to be affected at once (swallowing, hand, balance, Fasciculations all over) without one of those body parts first becoming severily disabled?

-how did ALS affect your hands? Could you see the muscles spasming in your hand? We're the pinky and ring fingers the first to go?

 

[pearshoot]

there must be a constant loss of strength. mine started left hand and arm. couldn't turn key in lawnmower, never was able to again. during testing right hand squeeze 90lbs left hand 45lbs, down to 0 left 31 right, one finger typing, old days 65wpm be glad you do not have als, if the neuro said i didn't have als i would be celebrating instead of trying to convince this forum i had it

 

[Barbie]

Whiy did you have an EMG in 3 limbs and not 4?

Here are my three answers to your three questions.

1. go back and get an EMG onthe last limb to ease your mind. if it is clean, promise yourself you will see a therapist to deal with your health anxiety.

2. Every patient is different, there is no "typical" onset. majority is in one limb, less in bulbar region, some do have body whid onset, but there are signs they might not reacognize as issues before the boy wide onset.

3. Every patient is different, there is no "typical" onset. if you want to see how ALS affects limbs, go on You tube.

Listen to me, what is this incessant and obsessive worrying accomplishing? if you had ALS, what would the diagnosis mean? would all this stress and worry have accomplished anything? NO! If you are diagnosed you will not feel better, you will feel worse. an you will still have to go one one day at a time living your life.
so why don't you do that now? You ar 22 yeas old, your doctor has told you you do not have ALS, this forum, while not doctors has tried to tell you the same thing. You can't hear anyone because you are obsessed with being ill.

between now and your next EMG on that last arm---do not come on this forum or any other health/illness forum. take a break because you are out of control.

(OMG--youth is wasted on the young...)