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]

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.

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 dx 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 "dx"?

[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 dx rather quickly and some that after years are declining and still dont have a dx.

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.

[JohnMc]

Hey Paul

I started seeing doctors in early March (for weakness, muscle twitching and unexplained weight loss). My regular doctor referred me to a neurologist, who did an EMG and some blood tests, and then this neuro referred me to another neurologist who specializes in ALS. The second neuro ordered a spinal tap and an MRI of my spine and some more blood work.

No definite diagnosis yet, although I am going back this Friday for another visit.

It is very weird dealing with the uncertainty. Obviously, I want it to be anything but ALS, but at the same time, if it really IS ALS, I would like to know this for certain. I have not really had a lot of anxiety over the situation, but I have gone through a couple of spells of feeling depressed about it.

I have heard of people on this forum who have lived with the uncertainty for much longer than I have, and I find it reassuring to read about the experiences of other people who are dealing with similar things and still finding joy in their lives.

Good luck with the Dr visit tomorrow,

John

[clint31]

wasnt long ago i was in your shoes my friend. I stayd up all hours of the night reading these forums and almost drove myself into insanity, I was sure I had it. I would stay on my thread all night hoping for a response and reassurance that never came.

I took the buspar and xanax. I had myself written off and self diagnosed. I had way more symptoms then you did in fact I still do.

Day of my EMG came, I was sick all day could barely function and could barely go bc of the anxiety and sure I was gonna get DX'ed. I cried in the waiting room.

I got a clean EMG and weeks later my doctor found out it was Lyme Disease. Causing the muscle twitches, the foot arch cramping, the achy muscles, etc. It mimiced ALS.

Im sending a prayer your way this second, you're going to be alright. You're going to get a good diagnosis and be just fine. You are doing well, considering when I remember how I was.... please know you're gonna be ok. The age is in your favor from what I know. I will be waiitng to hear how it goes

[Nailzaz]

Good News (I think), I got back from my doctor(neurologist) appointment - they did the EMG and I *think* it was "clean". He said with some certainity that I don't have ALS and that the twitching in my calves was likely do to exercise and my high Creatine Kinase levels were likely do to a fall or something.

Although I told him I would give him a hug, man love and/or a dinner if the news was good (which it was), I am still a little concerned. Mostly because I have that constant twitching still (going on for about a month).

Is this concern valid? Should I get a second opinion or just relax and believe that all is well?

Thank you (again & again) for the compassion and help you all have given.

Paul in Arizona

[crystalkk]

Paul,

That's great, just relax and believe it. Try to forget about it they actually might go away.
There was another girl on here with twitches after her clean emg, it cleared her mind and she stopped twitching. I think AL put a sticky on the post.
Go celebrate!!!!!

[Nailzaz]

Good Advice Crystal! Thank you :-)

[James m]

Paul - that is absolutely wonderful news - thank God.

Paul, i have read your thread with a lot of interest b/c i am about in the same place. 36 yrs old. both feet felt odd - kind of like prickly feeling. a few days later (now) both of my calves are just twitching non-stop. I am trying to re-assure myself that there are lots of causes out there but am getting progressively more and more anxious. This has been going on just about a week - came out of the blue. I hope to see a doctor tomorrow. Any advice would be so much appreciated.

Again - i am very happy for you.

[suzannj]

Congratulations Paul! I just read your string after not being on line for a few days . . . I must say that althought your neuro has a "good beside manner" who in the (insert swear word of choice here please!) would ever, ever, ever bring up doctor-assisted-suicide to a new patient who is scared to death! Holy $%*@!!!! What a nut job! Maybe next time I have to put a bandaid on my son I'll make to sure to tell him that he could also lose his leg! UGH!

Okay, rant over. I too am driving myself completely insane, (crying, worrying, waiting for my new health insurance cards to come in, waiting for my neuro appt., etc) so I know exactly where you (hopefully now) WERE. I still can't get over what that doctor said though.....unreal!

Take care.....take joy in your test results......and take yourself away from your computer! LOL
Suzann

[Nailzaz]

Hi James & Suzannaj!

Thank you both for the big "Congrats!". And Suzzanna, yeah maybe he just thought it was so remote that he was "joking" about it - bah!

James: I don't deal well with this stuff. I tend to take things to the worst possible scenerio, etc... and to be honest I lived on Xanax & Wine until my EMG came. In hindsight of course, I would have done things differently. But I did do some productive things that of course don't elviate all fear, but help some.
I did try to stay busy, I did listen over and over positive, calming affirmations on my iPod and stayed off the internet about ALS.

Hopefully that helps some. I still have muscle twitching and to be honest, I'm still concerned so I'm still doing the positive stuff and cut out the drinking and cut back on other things.

I wish I was more help but I PLEASE let me/us know how your tests goes. Do you get your EMG tomorrow or talking with a neurologist?

Paul