Newbie Seeking ALS Theory Opinion

Highlights Only
S

StressCrazy

New member
Hi everybody, I'm new to this forum so if i say something out of line please let me know :D) I've had a theory for quite some time and was wondering what you think of it. I noticed that several people on this forum had relatives who actually had ALS. In my case my father had ALS. Before he developed any symptoms I already had twiches in my calves. At the time my symptoms started I was 19. That was 20 years ago. My father died 5 years after his diagnose at the age of 65. Could it be that the twitching in bfs is caused by damage to the motorneurons just as in ALS but that the damage is so minor and the progression is so slow that the body is somehow capable of partially repairing the damage our somehow work around it? As one gets older the regenerative capabillities of the body get weaker which causes the twitching to get worse and spread to different areas. 10% of ALS is a hereditary variant so perhaps some percentage of bfs cases could be caused by a faulty gene that causes ALS in some individuals and a form of bfs in others. Makes any sense?The wikipedia site says that BFS could also be just another form of hypochondria. I just don't buy that since I've had symptoms before I ever heard about ALS and my father really developed ALS. My brother also twitches since two months. It seems highly unlikely that there is no genetic pattern. What are your thoughts about this?
 
I do not think so, benign fasciculations can be caused by many things, from thyroid issues to metabolic disoders and mostly, there is no known cause. There are not that many people with relatives with ALS as far as I know.Actually what you said could make sense but EMG would pick up abnormalities like denervation and reinnervation. No matter how slow, there is always an evidence of reinnervation if it ever happened.
 
I don't feel you are out of line with your questions. Some others might, but not myself. I try and stay open minded about this and many other aspects of my beliefs. I will say that I have shared many of the same thoughts that you write about. I too wonder if BFS is related to lower motor neuron damage and then self repair, in which the body is able to heal itself with twitching as a byproduct. The body being able to keep up with any progression. I could buy into this. However the body of evidence here seems overwhelmingly in favor of BFS either resolving itself, or the continuation of fasciculations without any progression to Motor Neuron Disease. You may hear of the oddball case here and there, but that's just what they are, oddballs. It is because these examples are so extremely rare, that they are written about and studied. I am very sorry to hear of your father. I thankfully do not know of anyone with ALS in my family. Actually I don't know anyone with ALS. I think the percentage of people with a family member with ALS on this board is relatively the same as the general population. A vast majority of us have never even heard of ALS prior to Dr. Google. BFS is a benign condition. It is hard to sometime wrap your mind around it, but it is benign.
 
I think that is it not possible. ALS is lately to derive from a breakdown of cell protein recycling causing a accumulation of "waste" in nerve cells. You can see that in histologic preparation. In BFS, nerve cells are not dying nor are they really damaged. Dying nerves are actually the opposite of hyperactive nerves. And in ALS, fasciculations are only a by-product of the disease.
 
Wikipedia also says that cannabis, particularly the indica strain, can help with the twitching. Maybe for the anxiety Caused by the twitching :), but not a darn thing for the fasciculations themselves. :confused:
 
There is a genetic "susceptibility" to get that but no link to ALS.You need (in my point of view) an external event like an infection to "trigger" that BFS like many of us (read old posts).My mom got BFS and she was 78 years old approximately and never lost her strength. She died of old age when she was 87 from a chest infection and she was previously walking quite perfectly ...Good luck
 
Thanks for all your reassurances. I guess that 20 years of having twitches, numbness, pain etc.etc has taken his toll on my psyche. The mental picture of seeing your father waste away and finding out years later that there is a 10 % heredetary factor made me loose faith in medics and professors who told me in the nineties that the chance of getting ALS where close to zero and that it wasn't inheritable. As long as I won't put my children through the same hell i've been through with my dad I can live with the symptoms just fine! Thanks
 
Damage of myeline shaft is multiple sclerosis, in ALS the whole nerve goes down. If twitching was a result of myeline damage, MSers should twitch like mad which they do not.But I believe sytrongly that there's a genetic predisposition to get thgings like IBS/anxiety disorder BFS and such things, which means the tendency of the body to transform any mental or physical stress into physical symptoms. We still do not know most of genetic inheritance but e.g, there's the fact that people with double jointedness (which is genetical) also have the tendency to develop fibromyalgia, anxiety disorder and twitching, so I am strongly convinced that there are also psychological tendencies enscriptet in our genes.
 
Stressguy,Try to focus on the fact that you have a 90% chance of nothing happening to you other than some annoying twitches that you have lived with for 20 years.9/10 are very high odds that you're going to be okay.I am also on board - I think your twitches are unrelated to anything that happened to your father (I'm so sorry that you had to see your dad deteriorate as he did).Mitra
 

Users who are viewing this thread

Total: 1 (members: 0, guests: 1)
Back
Top