Status
Not open for further replies.

larissima

New member
Joined
Oct 4, 2007
Messages
7
Country
US
State
MN
City
St. Paul
Hi everyone,

I am new ... sorry if I'm posting in the wrong area. I wasn't sure.

I'm scheduled for an EMG and some sort of surface test (?) at the end of this month. My left calf started twitching over a year ago, first it seemed mostly when I laid down/at bedtime. Then it started twitching all the time, then the right one joined in, and now I have occasional twitches in my arms, back and head as well. The neurologist said I need an EMG and that if I had ALS it would probably be atypical, as she would expect to see more muscle weakness by now. She also said that something is definitely wrong, and we need to get to the bottom of it, and this test is the only way we can do that. She wants to do the test herself, instead of using a technician (who usually does this test).

I have two little girls and the best husband in the world, and I am trying to stay calm. Honestly, I wasn't worried until I saw the neurologist ... I was attributing the twitching to big problems I had after a bad foot surgery to remove a nerve. Now as I lay in bed with four areas twitching, I sometimes feel sort of panicky.

Anyway - sorry for rambling. The neurologist told me the test will be very unpleasant for me, as they use more needles in areas where the results are abnormal, and she can see on exam that my legs, feet and back are abnormal. She told me to wear loose clothes that I can wash blood out of easily! (As sick as it is, my sister (a doctor) and I completely laughed about this. What else can you do?! drink?! :p) I know I am being a big chicken to worry about a little thing like an unpleasant test, but think it will go better if I am prepared. Can anyone tell me honestly what this is like, how bad it hurts, etc.? I am especially freaked about the bottom of my foot, which has continual nerve pain as it is. Do they insert the needles on the bottom of your feet too?

Thanks in advance for your thoughts. I knew about ALS a little before but have now read a lot. Whatever my results, I am going to donate money toward research for this disease on a regular basis, and I am going to pray for everyone who is affected by it. I have spent a lot of time this week thinking about my life, how I am living it, and what I can do better. I guess that is the gift of being genuinely scared, at least for me.

Thanks again -
L
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
Everyone is different, but I didn't find the EMG to be all that bad and definitely there was no bleeding. The needles are very thin, like acupuncture needles.
 

JoeinAZ

Member
Joined
Jul 9, 2007
Messages
10
Reason
PALS
Country
US
State
AZ
City
Tempe
My Mom recently had her 2nd EMG, very thorough and lasted over two hours. She described it as uncomfortable, but not painful. The description of the procedure seems scarier than the test itself. I know it's easier said than done, but being relaxed is critical to getting accurate results from the EMG. Spend some time before the test in the room relaxing, meditating or anything that works for you to be at ease for it.

Hope it goes well for you.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Joe's right. The description is worse than the acutal test. I've had about a half-dozen over the last 3 years and will most likely have more. They are not that bad.
 

larissima

New member
Joined
Oct 4, 2007
Messages
7
Country
US
State
MN
City
St. Paul
Hi again - thanks for the info. I appreciate it. Do they put the needles in the bottom of your feet? (I am still worried about this!) :) They had a cancellation so I'm scheduled for Wed the 10th. Thanks again for your feedback!
L
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi larissima - I didn't have my feet done but then I was not complaining about them at the time. Now that I have lost tiny little muscles I could go back but I'm still able to walk fine and only trip about ten times a day :) but I just stumble, never fall. I am waiting for something dramatic to be different before I go back. Not because of the testing. Just lazy I guess.

Really, the pin-pricks are not all that bad, and it is nice to have answers. Cindy
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
.................so don't complain about any parts you don't want tested?

Just kidding. I had both legs and one arm/hand done at various points - tops of the feet but not the bottom. The kind of focused meditation/relaxation breathing like what is taught in yoga and Lamaze classes was sufficient to manage the discomfort. The worst thing for me was that my back got achy from lying in one position too long.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
You got it, Liz! You know me well! :-D I was thinking of telling my Doc to call me when he thinks he knows what is wrong with me. LOL. Cindy
 

Peg B

Distinguished member
Joined
Nov 5, 2006
Messages
414
Reason
PALS
Diagnosis
10/2006
Country
US
State
Michigan
City
Flint
Hi larissima,

I totally agree the EMG/NVC (nerve velocity conduction) tests are not painful. Now that it was mentioned I did use the Lamaze breathing at times just to give myself a different focus. Usually both tests NVC and EMG are done at the same time. So I posted below a defintion from WEBMD. I did not know if you have heard the term NVC yet and thought it is better not to be surprised. I don't know really which test was which when I got them, but it was OK too. Never heard of bleeding from anyone else.

"An electromyogram (EMG) measures the electrical activity of muscles at rest and during contraction. Nerve conduction studies measure how well and how fast the nerves can send electrical signals. Nerves control the muscles in the body by electrical signals (impulses), and these impulses make the muscles react in specific ways. Nerve and muscle disorders cause the muscles to react in abnormal ways."

Also wanted to tell you I have had symptoms since 2002 and have been DX with "Atypical ALS" or Multifocal Motor Neuropathy (MMN. (Dec 7, 2006) MMN is treatable (not curable) but it slows the process way down and is not fatal. It is hard to tell the difference even for the ALS clinic (U of M) I still have atrophy in my right hand but I am getting IVIG treatment every two weeks and I am not getting worse really so... This might be helpful to you.

Please let us know what happens on the 10th. You are in my thoughts and in my prayers. That reminds me... On Friday our Priest made a general intervention prayer for all of those we have on our prayer lists regardless if we know or can see the person. I thought that was a great blessing to pass on. Hope this all helps. Sincerely, Peg
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
The first neuro my husband saw did the EMG on my husband. there was absolutely no bleeding anywhere. The test was at most uncomfortable as my husband described it. He was a little sore the rest of the day and that was it.

I really hope you find that you do not have ALS. Let us know about the results of your test.
 

larissima

New member
Joined
Oct 4, 2007
Messages
7
Country
US
State
MN
City
St. Paul
Hey everyone,

Thanks so much for taking time to reply, and for the information and support. I really do appreciate it. I'm sure it will go fine ... A friend said she thinks the sucralose (splenda) in my soda could be part of the problem. That sounds kind of far-fetched to me, since nobody else i know who drinks that stuff is twitching constantly! :p But I might go off it just in case. It can't hurt. It's kind of a silly habit anyway -- we are vegetarians and eat mostly organic/natural food, but yet I still have to have my soda.

Anyway - it will be good to get some more information/results on Wednesday, and I should know something right then since the neurologist is doing the test herself. Fingers (and twitchy legs) crossed for some good news! :)

Peg, I like the blessing you shared. My girls and I pray most nights for "all children, everywhere."

Peace to all of you,
L
 
Status
Not open for further replies.
Top