Status
Not open for further replies.

Lydia8800

New member
Joined
Dec 31, 2015
Messages
8
Reason
Learn about ALS
Country
US
State
Louisiana
City
New Orleans
Hey there guys! My last thread was closed but I had a few questions after 2 visits with Neruo. Here are some updates-

My first visit I was very nervous and didn't really cover/explain all my symptoms. It was partially because I didn't want him to get a strange first impression to not take me seriously , and the fact I was so stressed I just couldn't talk much.

So, I covered general twitching, cramps, some weaknesses ,and brisk reflex 3 in right knee jerk. He did his normal clinical and when he was hitting my muscles to see if they twitched back ...I guess I tipped him off about my fear. He then sort of laughed and said he "garunteed" I did not have Lou G. I felt washed over with relief and gratitude with my life. he suggested gabapentin, EMG, and MRI if that's what I wanted. No way I could afford those tests. He said I didn't "need" them but they were available.


They did some bloodwork, a test called cpk? Ckp? It shows if the twitching is causing muscle loss. Can you tell me how credible this test is, and what the healthy number should be? The next time I went in he told me it was at 63, he said it was low but is it supposed to be there at all? Or could it have gone up in the past 2 months?Should it be at zero? Anyways he didn't schedule me for another apt. Now I'm kicking myself for not taking him up on the emg/mri. Or how I didn't talk to him about lisping in the morning, the fact I can't balance on my right leg, along with how weird my tounge has been looking and memory loss/congnition problems. Should I make another apt. With him and get the mri and EMG?


It has been 8 months since noticed symptoms and some have gotten worse. I am a lot better now as far as obsessing and will accept your opinions and run with it. I just feel like I wasn't clear enough with the doc or specific.

Thank you
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,783
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Sounds like you have the all clear, great news!

That blood test does not diagnose ALS. If it is elevated (like many hundreds) it can indicate muscles are dying back but this could be caused by a myriad of much more common things. As the neuro said 63 is LOW, it means there is no issue.

Stay with the comment the neuro made - he guaranteed you do not have ALS.

I'm not sure what more you want. 8 months on, and no true progression, go celebrate and maybe get to someone to help with your anxiety issues. You will go on to have a full life :)
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
4,148
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Lydia, I'm so happy for you! Trust the neuro. Your muscles are fine! Your motor neurons are fine! That's great news. If you still experience anxiety, see the appropriate medical professionals.

Thanks for giving us the great news!
 
Status
Not open for further replies.
Top