Muscle Twitching, Stiffness and Cramping

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edwardIcetronix

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Hi I am writing here for the first time. I am 42 years old.I have twitching in my thighs for 4 months. also calves, maybe arms. I have been worried. I also have more than normal stiffness in muscles after exercise and muscles more likely to cramp when bending or stretching.
Having read your site I am fairly sure it is not ALS which is good, but could it be some other motor neurone disease (are there others?)
I have not had an emg yet
thanks
james
 
James...It's been my experience that if you pass the standard neuro exam and pass the EMG, then you won't be put in the disease category.

BFS is also known as cramp-fasciculation syndrome. So, your cramps don't necessarily mean you've got something any worse or different than the non-disease syndrome that we seem to have here.

The doctors will probably tell that you are experiencing changes, not disease. Isn't that special?
 
To they dont believe me:

you said--The doctors will probably tell that you are experiencing changes

That, in itself is really, really frightening.

What just occurred to me--they must have no idea how many people are suffering from something like this. I just read thst they don't truly know how many people suffer with MS and they just revised the number upward.

Kim
 
James

I am also from the UK and about the same age as you.

I am no expert but I think the other motor neurone diseases are just different versions of essentally the same thing.

My neuro dismissed twitching as a presentation of ALS saying it does happen but its unusual - most people present with weakness and its progressive and relentless. Most of their ALS patients have small twitches noticed by the doctor not the patient.

I am afraid unless you have private insurance or pay yourself, you may have to wait a while for a neurologist appointment. i was told that with just twitches and a normal neurological assessment and after 6 months there was no need for an EMG. In my case its seems to have been right as my symptoms got better but it took 1 1/2 years for them to do so.

Best wishes

Rich
 
I just want people who read this quote; "My neuro dismissed twitching as a presentation of ALS saying it does happen but its unusual." to understand that just because a VERY few cases of ALS patients do get classified as having twitches as a first presentation, that this does NOT mean they had a clean EMG, or that the twitches CAUSED the ALS.

It is clear and precise to say that in ALL cases of ALS, fasciculations are caused by dying and disconnection muscles and nerve endings, and the twitches are a SECONDARY reaction, not a primary action causing the ALS. It IS possibe for some people who actually do have ALS to first NOTICE twitches before weakness IF it was in a larger muscle group, which could take longer to notice any true, "clinical" weakness at early onset, but after months of twitching with no weakness, it is pretty evident that ALS is not probable.

Again, once ALL of the so called "twitches presenting first" ALS patients (which was only a couple) had EMG's, they ALL showd abnormal results.

It's kind of like seeing a lump on the side of your neck and finding out it was cancer. The lump didn't CAUSE the cancer, because the lump IS the cancer. If a biopsy was taken, it would clearly show and confirm that it was indeed cancer. ALS twitches happen for an entirely different reason than BFS twitches, and in fact, they are quite different, both visually and clinically than an ALS twitch, being that ALS twitches are true fasciculations, when most BFS twitches are not actual fasciculations at all, hence why some people twitch WHILE getting their EMG's done, yet the twitch never showed-up on the EMG.

So, What Rich and his neuso said is completely true, I just want it to be clear so no one freaks out about what his neuso said. You have to take things at face value and take into consideration ALL aspects of what is being said to understand what is going-on. In NO way does ALS present with twitches alone and NOT show it on the EMG.

A person may "notice" the twitches first, but that certainly doesn't mean ALS wasn't already clinically there, or wasn't detected on an EMG first. This is exactly the same thing the Mayo Study neglected to say when they stated that a couple of patients presented with twitches first. You think? People don't have EMG's in their houses, so it is quite possible that someone might happen to notice a small area of twitching BEFORE they npticed any weakness or got confirmed with an abnormal EMG.

If you had a clean EMG, you are about as clear as possible that you do NOT have ALS. If you have been twitching for quite some time, all over, yet you haven;t had an EMG yet, and you have no apparent weakness, you are HIGHLY unlikely to have ALS. I mean really, have any of you seen ANY one on here actually have ALS? No. Doesn't that speak for itself?
 
I would also like to add that many people with BFS do have true fasciculations, that do show up on emg (including myself), but that doesn't mean als. As the mayo study says, bfs was found in people that had fasciculation potentials during emg. So don't freak if you have fascics on emg, that isn't indicative of any neuro problem by itself.

Gary
 
BillBob is right and I should have clarified that a little more in my first post. Not all BFS twitches are ture fasciculations, but some are. In ALS, what they are looking for are true fasciculations, not thumpers and random twitches that are associated with the kind of twitches that don't show-up on an EMG.

EMG tests for nerve conductivity, and big thumpers, medium, random twitches and many other little one's we BFS'ers get don't show-up because they aren't using the nerve pathways (in general anyway) and they aren;t true fasciculations. BUT many (and probably all at one time or another) BFS'ers do get true fasciculations, in any randoma place, for any randome amount of time.

It is true, not all twitches are "true fasciculations", but some are. Either one does NOT mean ALS in the least amount of way UNLESS it involves dying nerves and muscle tissue, and so far, not one BFS'er has had that... not one!

Even people without BFS do get true fasciculations from time to time, and that is TOTALLY normal. These are usually little, short burst, random twitches in eye lids, or in a small spot of a muscle and then it goes away.
 
Again more people getting caught up about ALS...its a total load of crap if im honest. So many people come on here (including myself some while back) worried they have ALS. But you have to ask yourself is why is a massive majority of this community concerned they have ALS?? Twitching is just not a indicator of ALS...period. The reason ppl get worried about ALS is cause they have went on to and typed in "symptoms, twitches" and all this crap about ALS has came back. Its totally uneducated to do something like this and in the opinion of myself and my neurologist its *beep* right irresponsible that these websites that display symptoms dont give you any kind of indication of the actual symptoms purpose or their prognosis within the disease. Basically its like typing into google "symptoms, headache" and a load of stuff about a Brain Tumour coming back, when there is probably hundreds of other likely causes for it.

Best plan with the route of self diagnosis via the internet is dont do it, it misses out too many gaps. A patient who displays symptoms and does this looks at a list of symptoms and says "yep got that got that got that too" so basically a 1+1+1=3 equation to the uneducated patient" To somebody that actually know what they are looking for and is educated on the matter, they look at these websites and say they are misleading and often come up with the equation of 1+1=3, missing our vital information which can confuse patiends and cause them to worry. Another example for those that dont have a clue what im talking about is...put me down in front of a piano...ill press the keys but I dont really have a clue what im doing or what im looking for. You put a pianist in front of one and it all makes sense.

In the UK alone do you know how much money is beeing wasted on the NHS, due to the growing popularity of the internet and people following this route of self diagnosis? My GP has told me has about 50 people per week telling him they have read this on the net or that in a book and are now convinced they have this disease. Obviously some of those people have accepted the doctors opinion and others have not and gone on to suffer from some very serious mental health problems. When I went to see my neuropsychologist it really opened my eyes up, about how serious ppl can get...even as bad as ppl in wheelchairs convinced they cannot walk, when in fact they have nothing wrong with them at all.
 
uber...I don't disagree with anything you've said, but in my particular case it was slurred speech that sent me to the Internet. Then, I still didn't (don't?) believe the doctors because they said that my speech isn't slurred. Whereas I KNOW it's slurred, and whereas that symptom is not being given any credence in my diagnosis, therefore I still have some doubts about my BFS diagnosis. So, for many of us, it's not JUST twitching that causes us to think ALS. If all I had were twitching, I wouldn't doubt the BFS diagnosis.

Also keep in mind that doctors are trained to IGNORE a patient's symptoms, especially with regards to neurological complaints. They're looking purely for signs. In ALS, as with many disease, symptoms can begin long before there are verifiable signs. So, people naturally doubt a doctor's diagnosis when the doctor ignores symptoms and the patient knows the symptoms are real.
 

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