A Quick Question

[CowGirl]

I've been feeling weakness in my arms accompanied by twitches in both arms, legs, and sometimes even face (right beside lip). Some minor difficulty with swallowing too.
I went to my GP, and she said there were a couple of things she could check, such as strength, reflexes, some tickle thing up the middle of my toe, and the look + feel of my muscles. She said nothing was out of the ordinary, and quite honestly for me to not worry about it. She also stated that her experience with ALS patients, they usually had a moment where they were quite definitely sure something was wrong, a foot drop, or a few hard stumbles etc.
My GP claims everything is in check, and if I did have ALS, more noticeable things would be occuring. And also that at my age (28), and my sex, the probability is totally negligable.
should I take her word as gospel, or should I look into getting a 2nd opinion (at the clinic or hospital) and then perhaps even go see a Neurologist?

Thank You.

 

[CowGirl]

and sorry, my age is 28 ...

 

[CowGirl]

Also, in the past 5 years I've come to her with a few things I thought I had, like a blood clot, and one time even HIV. Both of which were totally false. I'm wondering if she's taking my past hypochondrea (sp?) into consideration, and thus fluffing me off. She did take her time in inspecting me, I'll give her that - but for her to hastily conclude that ALS is most likely out of the question has me wondering if I either need that 2nd opinion, or if I should just understand that she's a qualified professional and has had experience with 2 ALS patients in the past.

Again, thanks a bunch, guys.

 

[CindyM]

Hi Cow Girl and welcome to the forum. I think your GP is remembering that 28 is young to get ALS, and more men than women get it when it does strike. You can always find exceptions to this rule, of course. Remember this is a rare disease, so for you to get it at all would be rare in the first place, odder still to get it at your age.

That said, I think I'd get the swallowing thing checked out. Some of my relatives have strictures that need minor treatment from time to time, and when the proceedure is over they all remark upon how nice it is to be able to eat steak and such again. It makes a big difference in the quality of one's life.

My ALS clinic told me not to worry about twitches. They can be benign. But if you wish to nail down why all this is happening, you may need a clinic at a major teaching hospital. They have both the experience and the equipment to get to the bottom of things.

 

[CowGirl]

Yeah I also think it's pretty much too young to get it.
Do these twitches also occur in the face? Because I get them in the face a lot. and I have a very stiff, sore back. Is that usually related?

thanks.

 

[CowGirl]

and my arms constantly feel like an hour after I've pumped a 20 lb dumbell 100 times over or something.

 

[Zaphoon]

Cowgirl,

Your neuro is not paid to fluff you off but rather to offer sound, medical evaluations. If I were you, I would accept what she has told you as true. She would have no reason to hide the truth from you.

Zaphoon

 

[CowGirl]

oh, it wasn't a Neuro who did, it was my Family Doc. She was the one who after testing reflexes etc said not to worry about it right now.

yet the twitches (arms, legs, face) still persist. sometimes the twitch can be so hard it makes me jerk.
and my back KILLS me.

 

[Zaphoon]

Cowgirl,

Thanks for the clarity; I should have read your post more carefully.

Yep, I can deal with the twitches but when it comes to back trouble, I don't like that kind of stuff to linger for long. I would ask your GP about getting a referral to have someone check out your back. You don't want to have to go around with back troubles if you don't have to.

Zaphoon

 

[CowGirl]

so a stiff & sore back aren't really related to ALS?
what about periodic twitches in the upper-meaty parts of your legs constantly?

 

[CowGirl]

I know I just used the terms "periodic" and "constantly" together - what I mean is, periodically but consisent (as in throughout the day, every day) - sometimes on the front of the leg, sometimes the back. Sometimes like a scattershot twitch, more like a spasm, sometimes a really violent twitch, sometimes subtle. Sometimes in arms, but not as much. But then again, when this all started, I wasn't even paying attention to where it was happening. Maybe it was the arms at first and that's why my arms are the weakest. Yet if my arms are the weakest, wouldn't the twitches still persist in them? or does the twitching indicate that muscle weakness is going to occur, and then once it occurs the twitching isn't as apparent?

 

[CowGirl]

for while there the major thing was a thumb twitch. just the thumb. does that sound like classic onset of ALS?

 

[Zaphoon]

Twitches can be brought on by a whole lot of things, including stress. The greater percentage of twitches are benign and it is rare to have pathologic twitching but, only a neurologist can tell you for certain which yours are.

Muscle pain is not common in ALS but muscle weakness and atrophy are. Having said this, it takes a while for the weakness and atrophy to become noticeable. ALS doesn't just come on you all at once and suddenly your noticing twitches, weakness and atrophy. It takes a while to manifest and by the time you are realizing something is amiss, you are already further into the disease than you realize. Most people are a year or so into the disease before they even start the diagnosis process.

Zaphoon

PS - I do not have an MD degree or any degree. Just a guy that has something that mirrors a lot of ALS symptoms. Odds are, you don't have ALS either.

 

[CowGirl]

well I've been twitching for half a year now. Do you think by now some muscle atrophy would be noticed by my Doc. She said she sees no muscle atrophy at all.

or could the twitching last for a year or two before any atrophy is noticed?

 

[Zaphoon]

The twitching may never cause atrophy. In fact, in some cases it helps build muscle. Yes, if there was atrophy, your doctor probably would have picked up on it. In most cases, twitching is brought on by anxiety, over exercise, lack of sleep and 101 other things other than MND.

Picture a dart board about 100 yards away from you. Let's say you've never thrown a dart before and now you have one chance to hit the bullseye from 100 yards and the wind is blowing against your favor. Your eyes are blurry from oncoming drizzle and the dart you are throwing with is meant to only go 10 feet, not 300. You have about the same odds of having ALS as you would hitting the bullseye.

I can come up with more picturesque illustrations if you want. You seem like nice company. Anyway, all I know is that continued stressing over this can only amplify your twitches. I would try to think this is all due to something, anything other than ALS.

Zaphoon