Stressing and could use some advice

guyerj698

Member
Forum Supporter
Joined
Nov 21, 2020
Messages
16
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
MA
City
Boston
All,

My symptoms seem to come and go (which I know points away from ALS). I still haven’t had any motor loss / failure, more occasional pain/numbness/soreness. Those symptoms will come and go depending on the day.

I just learned that I could move up my EMG to tomorrow. Curious on your thoughts if you think it’s worth still doing? Again the neuro doesn’t believe it’s ALS but was willing to do an EMG. Part of me thinks it will help with my anxiety and constant second-guessing, but I’m also nervous/afraid of conducting one. I also am not sure of the cost?

Thank you again and I welcome any thoughts.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,592
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Will you believe it? Most of our worried well do not.

cost depends on your insurance. They are expensive. If you have a deductible it will probably go under it. My friend had one at mgh. The rack rate was over 2000. The insurance negotiated rate was over 1500 which she had to pay because she had not met her deductible
 

guyerj698

Member
Forum Supporter
Joined
Nov 21, 2020
Messages
16
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
MA
City
Boston
Oh wow - thank you for that. I have not hit my deductible so I imagine it would be out of pocket. I was thinking it was $250, not $2k.

Perhaps I will call my insurance company to find out.
 

guyerj698

Member
Forum Supporter
Joined
Nov 21, 2020
Messages
16
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
MA
City
Boston
My insurance company thought it was would between $250 and $300.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,592
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Interesting mgh is expensive and different insurances pay better ( which makes the deductible higher). I asked her again after I posted and there were 2 charges the test was about 1100 and a separate charge for the doctor who did it was 400 ( negotiated rates= what she paid). She looked at her bills to be sure. where are you going and what kind of insurance?

ETA it matters how many sites they do ( limbs, bulbar screen, paraspinals ) and I think how many muscles in each area
 
Last edited:

guyerj698

Member
Forum Supporter
Joined
Nov 21, 2020
Messages
16
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
MA
City
Boston
I am actually in Washington for the time being.
I believe mine will be conducted on my right arm - but not positive.

How painful do you think it will be? I hate needles so I am nervous.
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,845
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Central NC
Guyerj698. you wrote...

"How painful do you think it will be? I hate needles so I am nervous."

Which do you fear or makes you nervous the most? A little discomfort
having an EMG that will put that fear to rest (per your symptoms and 13
posts) or ALS?

I'd take 50 EMGs over ALS any day.

I'm sure you will be able to let ALS go... IF you believe the report following
the EMG.
 
Last edited:

guyerj698

Member
Forum Supporter
Joined
Nov 21, 2020
Messages
16
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
MA
City
Boston
Clearwater Al, thank you very much for that perspective. It was certainly not my intent to insinuate anything. This forum has been a godsend to me the past few weeks as i have endured these symptoms and health anxiety. I cannot begin to express the gratitude and appreciation I have for this forum.
 

guyerj698

Member
Forum Supporter
Joined
Nov 21, 2020
Messages
16
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
MA
City
Boston
All,
I just wanted to provide an update. I had my EMG this morning, including a NCS and the needle-version. I’ve attached my results.

While the doctor was fairly adamant I had nothing to worry about, I did not get to ask about performing the EMG and NCS on different parts of the body. He only performed it on my right arm/hand, said everything was normal, and then left. There was no time for follow-up and the whole thing just felt rushed. My question is if my results were deemed normal, could ALS still be present in other limbs (ex: left arm, either leg, etc.)? My thighs and calf’s occasionally twitch and seem weak.

Thank you in advance for any thoughts. This forum has been an incredible resource the past few weeks.
 

Attachments

  • 6BDC1718-5732-4FF8-9AB1-E645C2629D6F.jpeg
    6BDC1718-5732-4FF8-9AB1-E645C2629D6F.jpeg
    1.3 MB · Views: 23
  • D4B87BA6-3E6F-4371-A350-35EE3CC3DCFE.jpeg
    D4B87BA6-3E6F-4371-A350-35EE3CC3DCFE.jpeg
    1.2 MB · Views: 23
  • 72A22F83-F6AB-4B9B-882E-7A71A5980FC2.jpeg
    72A22F83-F6AB-4B9B-882E-7A71A5980FC2.jpeg
    852 KB · Views: 24

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,592
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
You stated you had symptoms your entire right side. You had your right hand/ arm tested. That is perfectly adequate. It is unnecessary to test every symptomatic area.

i asked you before the emg whether you would believe the results. not believing them is a common issue among our worried well

feeling weak and twitching are not worrisome symptoms for ALS anyway. Congratulations you are good to go

have a long and healthy life
 

guyerj698

Member
Forum Supporter
Joined
Nov 21, 2020
Messages
16
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
MA
City
Boston
Nikki - thank you for your response. While I know 99.9% of the time a normal EMG means no ALS, I just am alarmed at how weak/tired my right arm gets after using it (coupled with how rushed the EMG seemed). I will just continue to monitor this - I am not sure what else to do.

I cannot begin to put into words the appreciation I have for this community. You have all helped me over the past month in ways you will never know.
 
Top