Doctor just mentioned ALS -and I'm a little worried

[blee]

I'm a thirty year old white female. I've had some heart and kidney troubles all my life. This past month I've had a ton of cramps in my lower legs, mostly toes. Since monday of this week, my legs are constantly twitching, alllll over my legs, the arches of my feet, my toes, my calfs, the muscles in the tops of my knees, EVERYWHERE and it makes my legs feel soooo tired.

Today I was at a normal follow up appt with my doc and told her about them. She drew blood to make sure there was nothing abnormal and told me she'd call me tomorrow - she said if nothing is wrong with my blood work then she'd like to send me to a neurologist for a work up - when I questioned why she said ALS was a possibility along with several other things. I ofcourse have never heard of ALS until now.

It started in one knee and by the end of the day it was in every muscle in my legs. None in the arms or in any other part of my body. And I'm only thirty! Can someone help me figure all of this out or at least put it in perspective while I await my appointment?

My legs feel a bit tired, but they don't feel weak persay. just achy, with a ton of spasms in my feet. None of the twitches or spasms can be seen by looking at them, I can only feel them beneath the skin, and it only happens at rest, never when I'm up moving around.

Thanks to everyone, and my hearts are with those affected by this

 

[joelc]

I always get upset when a doctor mentions ALS as a possible cause before doing any tests to rule out other things.

From what you have said it is not ALS. That is not the way it starts. There are many, treatable, conditions it that make more sense.
It is a good idea to see a neurologist so they can properly diagnose you. Try to relax and let us know what you find out.

 

[blee]

Thanks Joelc. I am feeling twitches about 70 times each minute, they are relentless. Is the weakness that accompanies ALS profound or more of a tired feeling? It started with muscle cramps, then twitches, then fatigue, so if that isn't how ALS starts, why in the world would my doc even mention it? That seriously makes me want to change doctors if she would be willing to scare me for no reason.

 

[Mike27]

Hi blee, welcome to the forum.

There are quite a few diseases that mimic some ALS symptoms some of which are treatable.
It's too bad your doc mentioned ALS before she knew, that puts stress on you that you probably don't need.

Unfortunately, there is no definitive test for ALS, it's a game of elimination. They need to rule out other possibilities first.

In terms of muscle cramps, my neuro suggested calcium. he said the cheapest form was tums, though with your kidney problems you'll want to ask your doc.

Good luck

 

[lydia]

Hi Blee,

There are, as the previous posters have mentioned, soooo many alternative explanations for your twitches. Many many people have them without suffering from any disease at all. I do think it was cruel and insensitive of your doctor to plant that seed in your mind. I feel bad enough for forum members who learn of ALS as a result of googling twitches, but I feel truly awful for those of you whose doctors irresponsibly suggest it first. Because it comes out of the mouth of a doctor, it legitimately or not lends validity to the suggestion, and as a result you are probably going to have an even tougher time shaking this monkey off your back than others might. Try and remain calm until your neuro visit,

Lydia

 

[blee]

Thanks Lydia Mike and Joel C.
I'd really like to call my doc back, but first, correct me if I'm wrong:

I have no weakness in my muscles, just tightness and fatigue. If they were weak, I'd know it, I'd feel it, and it would happen before twitches - twitches are not the first sign -- correct?

These twitches only happen at rest - while laying down. Never when standing or while walking/working. In ALS, it would happen regardless of activity, correct?

It's happening in both of my legs (calves, knees, thighs and soles of feet), it didn't start in one side or one region, which is typical of ALS, correct?

You guys are amazing knowledge - and I remember being so annoyed when people would ask a million questions over the kind of heart failure I have in forums, thinking they had it too when clearly they didn't , so I promise not to bug and bother - I just needed a few more things to understand better.

Thanks!

 

[halfin]

First, I would agree with everyone else that the chances of you having ALS are very low. The demographics are in your favor, it almost never hits 30 year old women. And your symptoms can be many many other things than ALS.

It's not impossible that it could be something serious like ALS, so it is worth getting it checked out just to make sure. But bringing it up is like a doctor saying you might have throat cancer just because you have a sore throat. Sure, it's conceivable, but there are so many other things it could be that it is not very responsible to scare the patient like that.

Also, stress can make twitching worse, so it is very likely that just mentioning the disease is not helping your situation. Often people find that once tests rule out ALS that their twitching gets much better.

Go ahead and get your tests done. Even though it is almost certainly not ALS, it could be something that deserves attention. And if not, if it is benign (look up Benign Fasciculation Syndrome or BFS), then hopefully that will put your mind at ease.

 

[joelc]

Twitches are not used to diagnose ALS. They could be nothing or something treatable. If you have muscle weakness you will know it and it is nothing like feeling tired.
The doctor was irresponsible to mention ALS and is not qualified to diagnose it.

Again, twitches are not a sign of ALS. If you have ALS then you might have twitches but having twitches in no way means you have ALS or ever will have. Try to put this out of your mind.

 

[Marjorie R. Wilcox]

Cramps in the legs can be too much calcium. Do you take supplements? And do you overly exercise and tire your muscles out to cause spasms? There could be many reasons for your symptoms that aren't even related to disease, so take it one step at a time and whatever you do, don't panic and jump to conclusions. I don't like your doctor either. I wish you peace and patience.

 

[luvnmm]

Good Morning blee!

Welcome to the forum. You have found a great place for information and support. I love the people here.

I understand you feeling worry, but please try not to. The doctor may have been a little out of line to mention ALS before doing any testing. Was it just a gp that mentioned it? Did they ever say why ALS was mentioned? As stated by previous members, your symptoms don't sound like ALS, so I don't understand why the dr said it. A second opinion from someone else might give you some peace of mind. You may try that.

Keep us all posted on what's going on. We're hear for you.

 

[CopterNadle]

Welcome to the forum. by the way, how long have you been into that kind of situation?

 

[CopterNadle]

also, what area are you located? sorry for the double post, i can't edit my post.