I'm in the "I'm Scared" Club - Any Advice?

[Nailzaz]

Hi Everyone!

My wife advised me not to read anything on the internet about ALS, but I although I have been there are some reassuring posts here that have helped me.

The reason I'm writing is that maybe I can get some comfort if I asked you guys about my specific situation.

Here's my story...

About a month ago I began having muscle twitches in both calves. They are small but constant - they don't stop. I can see little "pulses" in my muscles. Being concerned, I saw my family doctor and he at first said I had Benign Fasciculation Syndrome (BFS) but he also drew blood and found that I have elevated Creatine Kinase at 461. He sent me to a neurologist and I an initial visit and basic tests (reflexes, strength, etc...) and he scheduled an EMG for tomorrow (Monday).

I have a lot of anxiety normally and this has shot it through the roof. I went back to my family physician and he just said, "I won't sugar coat it - I would be worried too" and gave me Xanax for my anxiety. I call the neurologist on-call and he seem more optimistic.

During my first (and only visit) with a neurologist - he was joking, fun and had a good bedside manner but he brought up ALS and even doctor assisted suicide and said that he hopes to never see another person with ALS again.

I am a nervous wreck. I have been drinking like an alcoholic at night to not be afraid and taking Xanax through the day. I know, very unhealthy - I know.

I think the only thing that will ease my mind is *if* the EMG comes back with a "it's nothing" result. But until then, I'm feeling more twitching in other areas and I'm pretty sure it's from stress.

Maybe I'm writing this for therapy or to somehow get some comfort.

Any thoughts or help would be GREATLY appreciated.

Scared in Arizona.
Paul

 

[Nailzaz]

I don't know if this information helps but also...

I just turned 40. I had Gastric Bypass surgery 2 years ago and after losing a lot of weight (about 200 lbs) I began exercising some - mostly weight lifting and about 30/60 minutes on a threadmill about 2-3 times a week. I haven't had any major muscle trauma (that I know of). I hope that maybe the exercise could have caused this (maybe I'm just trying to be optimistic).

Dang - I wish they could do the EMG today. I wish a doctor would give me some percentage.

Okay - that's all I have for now. Thanks again.

 

[BethU]

[QUOTE=Nailzaz;During my first (and only visit) with a neurologist - he was joking, fun and had a good bedside manner but he brought up ALS and even doctor assisted suicide and said that he hopes to never see another person with ALS again.
I am a nervous wreck. Scared in Arizona.
Paul[/QUOTE]

Good Lord, with a doctor like that, no wonder you're a nervous wreck! I hope that doctor never seens another person with ALS again, too!

I only can speak from what I have learned on this message board and my own experience, but it's a long, long road from finding twitches to a diagnosis of ALS. There are a gazillion other things it can be, and many of them are benign, many others are treatable. ALS is very difficult to diagnose. It is also very rare.

Others can say this much better than I can, but hang in there ... the odds are very much in your favor that it is not ALS.
BethU

 

[Nailzaz]

Thank You Beth. So when the do the EMG tomorrow they won't say "Bad news, you have ALS" - I mean, it's not that definitive? Thank you again for encouraging me.

 

[Al]

Stress will make twitches worse. Weight lifters/ heavy exercisers tend to twitch more than the general population. I'd not worry until after the EMG. Even if it's dirty I'd get a second opinion.

AL.

 

[JohnMc]

Paul-

It sounds like the only ALS symptom you are having is the twitching. There is a huge number of things that can cause this that have nothing to do with ALS. At least with me, I noticed muscle weakness before I noticed the twitching.

Going to the doctor and getting an EMG is a good thing, and hopefully you will immediately get reassurance that it is not ALS.

John

 

[Nailzaz]

Hi John,

They did ask and did a quick muscle weakness test (pushed against my feet, hands, etc... with me resisting). So that would be normal early sign I guess and I don't think I have muscle weakness.

P.S. I'm sorry that this anxiety is making me so self-centered. People who have ALS or other things that have been really diagnosed are the one's I would be better to comfort and talk to. Here I am in fear and I don't even know yet.

Al,
Thank you too. The doctor's mentioned breifly that exercise could cause this but it didn't sound likely they way he said it. So it's good to hear that could be a real reason.

 

[BethU]

[QUOTE=Nailzaz;50338]Thank You Beth. So when the do the EMG tomorrow they won't say "Bad news, you have ALS" - I mean, it's not that definitive? Thank you again for encouraging me.[/QUOTE]

As I understand it from my neuro, a "dirty" EMG is not in itself conclusive of ALS, although it may be suggestive.

But your doctor will have to eliminate a LOT of other conditions before they can make a definite diagnosis of ALS, even if the EMG is suggestive.

Again, as I understand it, you get diagnosed with ALS when they have eliminated every thing else it could possibly be. And there are a lot of possibilities to be gone through, including perfectly benign conditions.

Good luck on the test! Will keep my fingers crossed!
BethU

 

[Nailzaz]

Thanks Beth. What is "diagnosed"?

 

[JohnMc]

DX is short for diagnose or diagnosis.

As I understand it, if your EMG tomorrow is 'clean' this will be a pretty definite sign that you do not have ALS. If it is 'dirty', then they will do more tests. My EMG happened in March, and they have done many other tests, but they still have not DXed me with ALS although they tell me that is likely that this will eventually happen.

Good luck with the doctor visit tomorrow.

 

[Nailzaz]

Ahh... ok.

If I understand you right, then if it is a "clean" test - then no ALS but further tests to find out what it is.
If it's comes back "dirty" then it could be ALS or a host of things but again, more tests.
Either way, more tests.

John you have been waiting for months to find out exactly? How are you coping with that? If you don't mind me asking.

 

[awieleba]

HI paul,

hang in there. it is such a long road for some of us. There are some that get a diagnosed rather quickly and some that after years are declining and still dont have a diagnosed.

I am in the same boat. I believe I had weakness, but I was recovering from an illness. but when those twitcches started, i was scared after the internet. I have been twiching for over 4 months. they started everywhere and now the are resting in the same places.(wich has me more concerned) I have weakness, not clinical, but I can no longer work out like before. and feel it from everyday things, even doing my hair.

I went to a local neuro who did an exam and the emg/ncv, all good and gave me some anti-depressents for anxiety and stress. (ps i took xanax but my neuro said that is for extreme situations and lexparo has dailed my anxiety down) ANYWAY, I know my body and things were getting worse. I went to the als clinic and had anther ncv/emg that was clean. she said she did not think als at that point. Well, I am still getting worse, not better. NOw my hands/wrists have thinned out and my legs and I have notable atrophy on the left outer ankle that has come on quick. I noticed in march after checking my body, it was nothing to much then. It is huge now and my ankle hurts all the time. I am scheduled for a muscle biopsy on wed. My neuro said at the last vist, It maybe MG or Myopothy but she "hopes" it doent turn out to be als. Oh great.

My point is, with the muscle disease it seems they wont tell you als untill it shows on the emg. so if it is good, feel assured. But if your symptoms dont get better and feel worse than go to a specialist. If twitching is all you have at this point then that is a good sign, in my opinion.

On a side note, my sister is 280 pounds. she was getting muscle cramps all the time. It worried me more than my own mess. well she has not started working out and taking supplements and she said her cramps have gotten alot better. so maybe the wieght loss is the culprit here.

take care and hang in there and ASK quesions. It is your health/life.

good luck,

april

 

[awieleba]

in regards to my sister, I meant she now working out.

 

[lovelily]

Hi Paul and welcome to the forum!

Wow...your neuro is really over the top! :neutral: Usually you have to ring their necks to get any info out of them.

I just want to say that I have abnormal muscle biopsy, with denervation, ('chronic and acute') and EMG with denervation...fibrillations, positive sharp waves, and other bad things, and still no diagnosis...so, it doesn't necessarily mean that a 'dirty' EMG' will give you a diagnoses of 'ALS' unless you meet a certain criteria.

Good luck with your test tomorrow.

take care
lovelily

 

[Nailzaz]

Thank you ALL very much for the comforting words.

I'll probably check back again through the night and re-read your opinions and help.

One thing, someone did tell me that ALS is very rare for people who are under 55+ years and me being 40, hopefully that's a good thing. I don't know. But I'm going to have my glass or so of wine.

I can tell this community is full of compassion and that's very wonderful when there's nobody (seemingly) to turn to.

Thank you again.