ALS Concerns

[Atsugi]

Mike, the more you right, the more I'm sure you don't have an ALS problem.

100 ounces H2O with high blood pressure stands out to me. Here in Florida. my doc orders me to keep below 48 oz daily.

Note: I do not have ALS. But I twitch. And I have a mean case of Restless Leg Syndrome which evolved into Whole Body Jumps Whenever I Relax A Little.

I'm concerned that you're focusing on Neurology. A neuro knows neuro stuff. A GP, an experienced, board-certified MD or DO in general medical practice, is able to efficiently send you to the appropriate specialists to do a thorough investigation.

Wait until a doc has found something or ruled out something, before posting again.

 

[Anxiousbutstillmostlycalm]

Thanks all for replying. I saw a GP last week who seems quite thorough. She noted my sequence of events, did a basic muscle check and ordered lab tests for blood and urine. She didn't rule out anything at this point including ALS, but had me stop taking statins for cholesterol in case they are contributing factors. Lab tests came back clean except for slightly low potassium. I purchased a supplement for that on doctor's recommendation. I'll wait to hear from her this week to see what she wants to do next.

Right arm bicep/tricep/forearm twitching still continues most days but twitching in other areas ie quads, buttocks, left arm, calves are just occasional this week. The doctor noted that twitching is mostly continuous in my right arm vs. other areas. Right shoulder still hurts so maybe that is a contributing factor; pain in left elbow joint and right knee joint (maybe from running). I don't know what to think to be honest. The fact that twitching is mostly localized frightens me but at the same time I've no notable loss of strength to date; it's been about 3.5 months since initial symptoms. Pain from shoulder and elbow prevents me from doing pushups at this point, I hope rest will improve that.

Water: I was told by my cardiologist last month to stay hydrated, but no numbers were given for recommended intake. With my height/weight (6'1"/213), amount of sweating lost to heat in Thailand, and my daily gym activities I'd think 96oz. would be a good minimum. I couldn't find any reliable information on water intake effect on blood pressure.

 

[Clearwater AL]

As Mike (Atsugi) replied...

"Wait until a doc has found something or ruled out something, before posting again."

But... that didn't seem to work.

It's time to close this Thread.

 

[Anxiousbutstillmostlycalm]

Clearwater AL, I posted again specifically because my clean lab tests rule out Thyroid gland dysfunction, electrolyte abnormalities, and nutritional/vitamin deficiencies according to my doctor.

My doctor has also NOT ruled out ALS at this time. If my post hasn't met your criteria I apologize.

 

[Clearwater AL]

You are saying your GP hasn't ruled out ALS?

That's not her call. If she refers you to another Neurologist... it's his or hers.

You've been through this before as I wrote to you...

"You had consultation with a neurologist April 2 and online consultation with another. Neither had any concern of you having ALS."

I agree with Mike (Atsugi). The more you write... (I mentioned push ups then you come back and say you can't do push ups because of pain in your shoulder but hope rest will make it better) points away from ALS.

Ok, excuse me if I'm confused... is it your GP who won't rule out ALS or is it a new Neuro?

 

[KimT]

If you bought potassium supplements, they only offer a fraction of the RDA. Try eating some potatoes, including skins, avocados, and bananas.

Report back when you see a neurologist, if you are still concerned about your symptoms being indicative of something neurological.

 

[lgelb]

The post on the GP update in within the sequence we suggested, Al. PCPs can rule in or out anything they like, but yes, it takes a neurologist (or two, as we recommend) for a definitive diagnosis of neuromuscular disease.

Anxious, you're engaging in logic-chopping. The GP's inability to "rule out ALS" via lab work does not equate to any additional concern that you have it. As you see in myriad other threads, unexplained twitching is a seemingly common phenomenon, and your twitch-free period augments our inability to express concern in re ALS.

So pending any further testing or referrals, let's get on with our lives. I will leave the thread for now, as a way to capture any new testing, referrals or reports, but please do not post any further symptoms or questions otherwise.

 

[Anxiousbutstillmostlycalm]

Referral: My GP asked if I wanted to see a neurologist if I was staying longer in Syracuse, but a week wasn't enough time to book an appointment with a VA neuro and I'm back in Bangkok for now.

But then in her next email she said: "I agree that you do not need to see a neurologist at this time or even get a nerve study done till something else shows up .keep me updated"

Twitching continues daily in right arm and now is starting in left arm along with randomly everywhere else, even one on my head. My question for forum members at this point is: how long would be typical to twitch without weakness to have some piece of mind that ALS is not on the table? My diet, rest cycle etc. is very tight, but doesn't seem to affect or lessen twitching at all. Other than that question I'll not post here again until/unless something new develops. Thanks forum members for taking the time to read/reply.

Mike

 

[Bestfriends14]

Your questions about twitching have been answered quite a bit thus far, and no doctor or forum member seems to think you have ALS. That is great news. Time to move on... People on this forum who actually have ALS would give anything to trade places with you.

Good luck to you and take good care.

 

[Anxiousbutstillmostlycalm]

Yes it’s true that all I have is progressive twitching since my first thumb twitch In January, and that based on the reading I’ve done I’d not expect much suspicion of ALS from that alone.

However, when I read links like this from the board where several members started with exactly the same upper body fasciculations with no weakness for months before weakness, atrophy or bad EMGs Show up that I feel that I’d be foolish to move on until I can get a read on how much time needs to pass before I’m safe.

https://www.alsforums.com/forum/gen...one-have-fasciculations-before-atrophy-3.html

 

[Nikki J]

I read that thread. Several people reported fasciculations before atrophy. Mostly they did not comment on when weakness showed up if they were PALS. There was one second hand report of fasciculations before weakness in a PALS. There were a lot of posts by people who did not have ALS.

The person who was reporting on her father couldn’t know whether he had mild weakness with the twitches and he also had FTD so if he said ( we don’t know) there is a chance it would not have been accurate

Fasciculations before atrophy is commonly how it goes I think but weakness generally precedes or coexists with fasciculations

 

[Bestfriends14]

I read that thread and most of the people who posted did not have ALS, and were merely reporting from a BFS standpoint, therefore, talking out of their rear.

Let me get this straight, Concerned, you're actually hunting through hundreds of posts to come up with reasons why you have ALS? Seriously? Sorry, Jack, no weakness or inability to do something=no ALS.

When you started this thread, you said you would keep it short and to the point, get your answer and be satisfied with it. Well, we are now on 2 pages of posts, several by you, and you're not taking anyone's answers, forums members or health professionals. I'm really not sure what else anyone can say to you. You're bound and determined to come up with reasons why you have ALS, which I think is kinda sad. I hate this disease, my husband definitely hates this disease, and you're hunting for it. Good Lord.

 

[Anxiousbutstillmostlycalm]

Thanks for the replies.
Bestfriend, I'm not pecking through the forum I did a google keyword search awhile ago; it brought that thread up and I bookmarked it and several others for reference. I absolutely am not looking for reasons to have ALS; just hoping for some piece-of-mind. I completely accept that I'm in a "wait and see" state now with regard to twitching, but at the same time experiencing these localized arm twitches all day every day now makes me fearful based on things I've read. I'm just trying to gather information on how long that might typically continue without other symptoms before I'd be considered "safe" from potential NMD. That's it.

 

[KarenNWendyn]

Dear Anxious,

Twitching is freaky. It looks weird, it feels weird, and it signifies a loss of a certain amount of control. Nobody enjoys that. But there’s really not much you can do about it. Those of us with ALS have learned to try to ignore our twitches. Really, they’re the least of our concerns. Those with BFS and the myriad of other (mostly benign) conditions associated with twitching eventually learn to do the same.

Best of luck to you.

 

[Clearwater AL]

Anxiousbut... above you wrote what your GP said,

"I agree that you do not need to see a neurologist at this time or even get a nerve study
done till something else shows up." (I doubt she was agreeing with you from all you have
written. Apparently she consulted with your Neurologist or someone else.)

At the end of that post you wrote,

"I'll not post here again until/unless something new develops."

A few have answered your question about twitches numerous times.

Again, ""I'll not post here again until/unless something new develops."

Two pages, possibly going to three.

NOTHING NEW.

It's time to let this go...