Myscootch
Member
- Joined
- Jul 17, 2013
- Messages
- 16
- Reason
- Learn about ALS
- Country
- US
- State
- New jersey
- City
- Flanders
It has been awhile since I have posted! I started my journey a little over 2 years ago and it has been verified that I do have Upper Motor Neuron issues, however, my question at this point is I realize there is a "time frame" for ALS (about 15 to 18 months from the start of symptoms) but I have had intermittent fasciculations for the last two months now. I only know of one disease that has both Upper & Lower Neuron issues which is ALS but even though I have very visible fasciculations throughout my body intermittently I have no muscle wasting or severe weakness at this time.
1. Are there any other Motor Neuron Diseases that have both? (I have not found any as of yet)
2. Are there people who have had fasciculations without atrophy & weakness?
3. Is there really a time frame for ALS that is outside the "standard" or "typical" version?
4. The doctors tell me it is not ALS but also state it cannot be ruled out! How can this be?
Are there any folks who took longer than the "standard" time frame for ALS to be the diagnosis? I only ask as I have had so many tests, have been a person of the disease of the month club which in my case changes as my symptoms do and the tests themselves have been quite wacky to say the least. I do show symptoms in at least 3 regions, but again no significant atrophy or weakness. Things have changed within the last 2 months which is different than it has been throughout the entire process.
It doesn't matter to me if it is or isn't at this point as I have already been told what I have is "neurodegenerative", there is no treatment or cure and go home and enjoy the days for which I do, I just am curious at this point as I am really confused. I have video at least to prove I have the fasciculations but am hoping someone else has a clue regarding them at this point and the progress of MND.
Thanks -
1. Are there any other Motor Neuron Diseases that have both? (I have not found any as of yet)
2. Are there people who have had fasciculations without atrophy & weakness?
3. Is there really a time frame for ALS that is outside the "standard" or "typical" version?
4. The doctors tell me it is not ALS but also state it cannot be ruled out! How can this be?
Are there any folks who took longer than the "standard" time frame for ALS to be the diagnosis? I only ask as I have had so many tests, have been a person of the disease of the month club which in my case changes as my symptoms do and the tests themselves have been quite wacky to say the least. I do show symptoms in at least 3 regions, but again no significant atrophy or weakness. Things have changed within the last 2 months which is different than it has been throughout the entire process.
It doesn't matter to me if it is or isn't at this point as I have already been told what I have is "neurodegenerative", there is no treatment or cure and go home and enjoy the days for which I do, I just am curious at this point as I am really confused. I have video at least to prove I have the fasciculations but am hoping someone else has a clue regarding them at this point and the progress of MND.
Thanks -