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

[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