My first neuro visit

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Postby amy_twitch on August 17th, 2004, 11:14 pm

Ahh Peg,

Eke...it's been a day and you're already over-analyzing your twitches! Time will definitely help you out. However, since you're already posting so many worries after your neuro visit, I definitely think you need to get your booty back in there for the EMG. It will give you jump start you need to start going down the road of 'knowing for sure' that this is benign. Though it might not bring 100% comfort to you (like many of us, you'll still seek some reassurance even after the EMG), it will greatly lessen the potency of the 'what-ifs' that are lingering in your head.

I can so empathize with what you're feeling right now. An EMG and six more months--and you'll be where I am now in this process. I wish I could get you there sooner!!

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Postby Vas on August 18th, 2004, 10:33 am

Its all so confusing- I have heard in the past that pain is not associated with ALS, now I hear that it is. Pain or no pain in ALS?
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Postby speg on August 18th, 2004, 10:35 am

The neuro did mention something about the calves and thighs being common places for twitching . . . benign twitching, that is.

He also said alot of BFSers twitch on their tongues for those of you who do!
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Postby Stephanie on August 18th, 2004, 7:56 pm

I have heard and read numerous times that pain and sensations are NOT associated w/als.
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Postby Jayel on August 19th, 2004, 10:32 pm

Steph-

Yeah, me too. I have been told and heard the same thing about ALS being "sensation" free. I am unfortunate enough to "know of" 3 people--all family members of friends of ours, with ALS. All of you are correct about the dramatic changes over a short period of time. None of the people in these family situations complained of any pain unless their caregiver manipulated them incorrectly. HOwever, I have heard of hard cramping with ALS--not your light cramp but a writhing charley horse that would be unbearable.

That's what I know for sure.....for now!! :wink:

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6 month wait

Postby Donna L. on August 23rd, 2004, 11:10 am

Peg, you sound like your just where I am. Maybe we can help each other out during our wait. My twitches started the last week of May after a sinus infection which was followed by a severly anxiety ridden 2 weeks. I was actually freaking out about having another illness which I now know I don't have. This whole health anxiety thing is new for me. I never worried about my health until this past May.

I have twitches in my feet almost constantly, my calves, thighs, back and some times arms. Also some tingling, pins and needles and ear ringing and some mild cramping. I have driven myself sick with worry over ALS.. I didn't catch your age, but I am 39 and I have 2 kids, one with special needs. This is a very tough time for me. I have started on Effexor for depression and I take valium when the anxiety gets too much for me. I am particualrly scared about getting throught the next 3 months. My neuro appt went well, normal neuro exam, but the Dr. did not order an EMG. She said she didn't think I needed more testing at this
time, but I go for a follow up on Sept. 13th.

Take care, I will be thinking of you!
I am so glad to have found all of you who understand this!
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Postby Stephanie on August 23rd, 2004, 1:24 pm

You don't need an emg if you have a normal neuro exam, but you might need it to help you mentally. It's something I read when I am scared. I had my eyebrows waxed today and believe me that is far more painful/uncomfortable than an emg! Hang in there!
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Postby garym on August 23rd, 2004, 3:04 pm

Donna,

did you take cipro, levaquin, tequin, amicrobin or any other antibiotic for your sinus infection?

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Postby speg on August 24th, 2004, 10:47 am

Donna,

We must be twins! How utterly odd. My twitches started the last week in May as well. It followed a severly anxiety ridden couple of months, like you, freaking out about an illness I ended up not having. My health anxiety has gotten so bad, I am also worried about a couple of other things right now in addition to ALS!!!

My twitches are 90% in my calves, but I have had them in my feet, palms, thumb, eyelids, top of thigh, outside of leg and behind the knee. I also have buzzing in feet and ear ringing.

I am 42 and lost my only child right before all this started. Very tough time for me as well. I am on Zoloft and Klonopin. The klonopin really works well on the twitches.

My follow-up isn't until November, however.

Tell us more about your neuro visit.

Feel free to PM me at any time.

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Postby speg on August 26th, 2004, 9:43 am

Donna,

Are you getting my private messages? They are not showing up in my sent box.

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