Thanks.
The neuro appt is in two weeks. I'll definitely report back.
Meanwhile, thanks for the info and reassurance.
Howie
I was wondering when that question would come up. Fasciculations are more "associated" with ALS than with MS.
First I have to warn you that I am not a neurologist and definitely not an expert in ALS. From what I have read, however, fasciculations are a "late" occurrence in ALS. This means that the twitching happens in muscles that are already atrophying (shrinking) and very weak. They do not, I don't believe, occur all over right at the beginning.
ALS itself starts distally and moves proximally. This means that the weakness begins in the hands and the feet and moves upward toward the trunk. The hands are where you usually see the wasting (and severe weakness) of the muscles first . But, there are variants of the ALS type of disorder where you can see problems go from the thighs downward and the upper arms downward. These are very rare.
Does it bother me that you have hot spots. Not really, but then I am not an expert. It sounds to me like you are describing Benign (with an emphasis on "benign") Fasciculation Syndrome. BFS - you might google it.
See the neurologist... 'Kay?
And please know that I am not mocking you when I tell you that we see someone with your exact complaints at least once a month. Twitching is common, the internet supplies the link to ALS, and they arrive very, VERY anxious. When we hear back they were always diagnosed with BFS. Don't drive yourself batty. Get that appointment.
Good luck and be well
Quix
Thank you very much for your post. It helps tremendously.
I hope I can bug you for a couple more short answers.
I know this is an MS forum, but does what I am describing sound anything like ALS?
I have a couple of "hot spots".in my left hamstring and my left quad. They tend to twitch more than other and they tend to be big twitches.
Is the fact that these tend to reoccur worrisome?
Many thanks again
Howie
Hi, Howie and Welcome to the forum. I'm glad sllowe got to you, but sorry I missed this the first time around. I hope you don't leave before you get some more answers.
First off, it sounds like you are describing 2 different kinds of jerking. One is the little, muscle jerking that you can feel and sometimes see under the skin, but that don't cause any movement of the body. These are called fasciculations.
The other kind that actual cause movement of the body or of a limb may, indeed, be myoclonic jerks.
What you are describing does NOT sound like MS at all. While you certainly can and do see fasciculations in MS, they tend to be limited to those muscle groups whose nerves have suffered some demyelination. When they appear and then move throughout the body, it is due to something else. My reading says that a viral syndrome - often not noticed otherwise - can be the culprit. Once started the fascicualtions can last a long time - more than a year.
The important thing is that fasciculations are caused by the Peripheral Nervous System, those nerves that have left the spinal column and gone out to the body. MS is purely a disease of the Central Nervous System - which is made up of the spinal cord, the brainstem and the brain. That is your best piece of evidence that you are not suffering from MS.
What you are going through is very common. People with your exact complaints appear regularly here and over on the Neurology forum. Diffuse fasciculations, while not at all dangerous, can drive you batty.
I suspect the stopping the Depakote may be playing a role. Depakote is used in many disorders to exert a "calming action " on nerves. When you stop any med of this type you may experience increased jumpiness or twitchiness. I can't see how the sinus infection would have contributed to the fasciculations.
I do NOT believe that anxiety causes fasciculations. However, once the twitchings are present, anxiety and stimulants definitely make them worse. Be careful about caffeine and other stimulants.
You can see fasciculations in a muscle that has been immobilized (like from injury or illness) for quite a while. When you begin exercizing the now-weaker muscles you may see the twitching. Also, heavy exercise may cause the twitching in the immediate post-exercise period.
In MS, twitches do not move around frequently. Again, they tend to occur in the weakened muscles.
The shaking you feel when you are sitting and place pressure on the ball of your foot may be clonus. This is an exaggerated tendon reflex at the ankle. This may be abnormal, especially if it is a new thing. I have had that on my left for as long as I can remember. This should be checked out carefully by the neurologist. Clonus can be seen in MS.
I'm not sure about the smile twitching.
The tremor caused by MS is almost always an action (intention) tremor and not a resting one.
So, my advice is the same as sllowe's. See a neurologist and be checked over thoroughly. I have seen this type of symptoms in a person with Lyme Disease. I think being tested for this would be a good idea.
We have another fourm here for people who have widespread fasciculations of long duration. You might want to post there and see if they can give you more info. It's called Peripheral Nerve Hyperexcitability Syndrome. It's a small forum and you might have to wait for an answer.
I hope you see this and I hope it helps.
Quix
Thanks for your kind comments and welcome. I much appreciate it.
To answer your questions, this started right around the time I stopped the Depakote, although I cannot be positive it was after I stopped the meds.
I am in the process of making an appt with a neuro, hopefully in the next two seeks.
I will provide an update. I too hope I can find the culprit.
Hi Howie,
I'm going to 1st apologize to you for not being able to answer your questions. There are just so many variations of MS symptoms.
You probably know yourself pretty good and if this is new and different, it's time to talk to the Dr about it. Maybe there are some residual issues w/stopping that med you mention. With most meds there are side affects of stopping, just like there are when starting. But did this start after stopping? Or before?
Gosh, I'm so sorry you have this going on. If it makes you feel better, please poke around, and meet some of us.
thanks for joining us, and I do hope you are able to find the culprit.