when do you have to stop worrying

[lizbeth219]

AFTER A COUPLE OF NORMAL NEURO EXAMS AND A NORMAL; EMG- IF WEAKNESS OR ATROPHY OR A CHANGE IN REFLEXES IS NOT SHOWING HOW MANY MONTHS AFTER THE ONSET OF TWICHING AND SPASMS WOULD YOU STOP WORRYING ABOUT ALS.
thankyou

[CCF-Neuro-M.D.-JT]

Unfortunately there is no single test that can definitively say yes you have ALS or no you definitely do not have it. The diagnosis is based on the clinical exam, history and EMG findings. As everything seems to be ok in your case, the diagnosis becomes less likely and should help reassure you that you probably don't have the disease. WIth persistence of symptoms, I would recommend followup neuro exam byt a neurologist in 3-6 months. And then they can determind whether or not you need a repeat EMG based on their findings. You could also consider a second opinion. Good luck.

[twitch_city]

I am really sorry I posted before you.  I will not do this again.  Please respond to there post.  After reading this letter I do not belive it has relevance to this case.  The letter was in regard to the dx of the disease.

[twitch_city]

Here is a I received form the ALS organization.


Hi Jonny,

I can appreciate how frustrating it must be not knowing the cause of
your muscle weakness and twitching.  To date, there are no tests to
diagnose ALS, and without ruling out other possibilities it is very
difficult for a physician to give a definitive diagnosis (it is not
uncommon for a doctor to take up to 12-15 months before making a final
diagnosis).  Some things you may want to discuss with your neurologist
are: Lyme disease (there are blood tests for this called ELISA and
Western Blot), metal toxicity, hyperthyroidism and Kennedy's disease.
Although it is rare to have these medical conditions, all have the
potential to show ALS-like symptoms.  

Regarding an EMG, we had a doctor (ALS specialist) visit our Foundation
from Massachusetts's General Hospital for a discussion on ALS, and she
shared with us that her preference was to perform EMG testing in the
upper pectoral area (above the clavicle).  

Please know that you can contact me anytime to answer questions
regarding treatment options or to help you find the best information.
We here at ALS Therapy Development Foundation focus our services on
reviewing all the science available to find possible mechanisms of the
ALS disease, review existing drugs and nutraceuticals to test on SOD
mice, so we can then publish the results to help patients make the best
decisions regarding treatment.  Other organizations such as the ALS
Association (www.alsa.org) have more information regarding general
questions, patient care, insurance information, etc.

I hope this has been helpful, and please let me know how you are doing.

Take care, and all my best to you.


Janice Power
Treatment Coordinator
ALS Therapy Development Foundation