Questions about Twitching Symptoms

[jellybeans498]

I have the same concerns as many of those that have posted on this form.

I have two nagging questions about my symptoms.

First, I will provide some background. I am a 34 year old male. About 6-7 weeks ago, I noticed twitching which appered to be more frequent than just the occasional twitch that just about everyone experiences during thier life. Then on about January 17, I noticed muscle twitching all over my body. Over next few days, my left leg had sensations of tingling, mild numbness and sense that muscles especially the calf were quivering almost constantly. Left leg felt to be not operating normally when I would walk. Additionally, have felt intermittent tingling in left arm and at times a dull aching sensation. 1/21 my CK level was 850 and 1/23 was still in 800’s. 1/27 EMG/NCS of both arms. Results of EMG,“Mild bilateral carpal tunnel syndrome” and “No other EMG abnormality”. 1/29 CK level 367. 2/4 EMG/NCS of left leg. Summary results, “The nerve conduction studies of left lower extremity were normal. Needle exam showed two single fasciculations in left medial gastrocnemius with normal motor unit potentials. Needle exam of remaining muscles was normal. No fibrillation was detected in left lumbosacral paraspinal muscles, but relaxation was poor.” Clinical interpretation was,“EMG of left lower extremity was normal.” 2/10 CK was 237. On 2/12 I visited a neurologist for an office exam and to review test findings. He concluded that I do not have ALS and that no further testing would be necessary. 2/24 CK was again 237.
My symtpons persist, muscle twitching, tingling/numbness in left arm and most notably sensations in left leg and feeling that it is going to give out(no clear weakness but wonder if problem in leg could be early signs of weakness).

I have visited 4 Dr's over the the course of my symptoms and each one has assured me that I do not have ALS. The Dr. that conducted the EMG of my left leg is one of the top nueromuscular Docs in the area, and eventhough she didn't do a full office exam, I do find comfort that she conducted the more technical aspect of the exam (being the EMG). I continue to be concerned that I may be too early in the disease (ALS) for the Dr's to have identified it.

So my two questions are:

1) Could this continuing sensation in my left leg be BFS?
2) How noticable is ALS associated weakness and would it be obvious after 5 weeks? I worry that the feelings in my left leg are actually the start of subtle weakness.

Thank You for your help and support.

 

[garymills]

first, welcome the board, sorry you need to be here, but this is a good place for you. I think you will find a lot of positive support and candid information here.

Now to your questions. The answer to your first question is yes, the sensation in leg absolutely could be BFS. That type of sensation is in fact very common amoung members of this board. I know that it is worrisome, but relax because most of us have experienced it. To answer your second question, I have to say that i don't know how noticeable ALS weakness is, because I don't have it (according to my drs. ) ). But more importantly, if you had ALS your EMG would not be normal, even this early on.

As for your CK levels, there are lots of different things that can influence that. My first question would be do you work out a lot? If so, that could be the reason. Bottom line is I wouldn't let that worry me to much. Believe in your drs., and their dx. You will save yourself some much worry and stress, believe me, I did the opposite and it was terrible.

One last thing, DO NOT RESEARCH ALS! That is a bad panic attack waiting to happen. I've done it before and have seen it happen to many, many people since joining this forum.

Good Luck, and let me know if i can help you in the future,
Gary

 

[JennFiction]

Sounds like a very typical case of BFS: all over twitching, normal EMG, numbness and tingling...If you can learn to control your anxiety over the situation you will find that you will feel better much more quickly. Many of us have one-sided manifestations, for whatever reason. Which is your dominant hand? Mine is my right, and I have worse symptoms on my left side.

The bottom line, like Gary said, is if there was any chance you had ALS, the EMG would have picked it up. If your doctors aren't worried, you shouldn't be either! Joyful news, as there are many things out there much worse than BFS.

You might want to read the Mayo findings on their long term study of people with BFS, they concluded that BFS is completely bening, with no one going on to develop ALS or other NMD. You can find the link from the start page of this site. Good luck and I hope you can get your anxiety under control...that is for sure your first step to recovery (almost all of us have been where you are now...so rest assured there is hope!) Might I suggest anti-depressants? They helped me enormously in the beginning.

Take care, Jen

 

[Alonzo]

NOTHING I read looks anything even remotely like ALS, and your clean EMG's prove that without a shadow of a doubt, so get the letters A.L.S. out of your head.

Tightness in the calves is common when they twitch a lot. Twitching is muscle movement. Hold your arm out for 5 minutes and see how "tight" you feel the next day. You weren't working that hard and you didn't have any real weight on your arm, BUT you indeed DID work some muscles that you don't normally work, and you WILL feel it sooner or later.

The same thing goes for twitches. Whether you believe it or not, whenever you twitch, a muscle contraction is happening. If they happen all day long and all night long, it would make sense that the muscle area that has been going though the contractions WILL be stiff and sore at some point or another.

You sound like you have BFS as clearly as it can be, and again, EMG's don't lie. I have NEVER seen ANYONE on here with a clean EMG (heck, even without an EMG) develope ALS or ANY other NMD once they've been diagnosed as having a benign condiotion... That's pretty solid proof that BFS IS indeed benign and that ALS is indeed rare and has NOTHING to do with BFS... so what more could you want?

Accept it and move-on with life. It WILL be annoying at times. It annoyes me all of the time, but what are you going to do? I'd rather have this than migrane headaches where you are rendered comletely helpless and have to be on your back, in a quiet, dark room HOPING the medications work. You could also have all kinds fo worse things... cancer, tumors, heart disease... just be happy what you have is benign and not life threatening what so ever. Not dismissig that BFS is a pain in the

You can see doctor after doctor and get all the benign doagnosis' you want, but the bottom line here is you will NOT be able to move-on with life if YOU don't accept that what you have is benign.

 

[holisticdriver]

To me this sounds like the presentation of a few neurological and psychological problems but id have to agree with everybody else and say ALS is not one that comes to mind.

Your symptoms could be consistant with early MS...have you had an MRI to rule that out?? Also as many others have mentioned BFS is another common neurological problem that can present with these type of symptoms. The list really can go on and on....can I ask if you were going through a lot of stree prior to your symptoms developing?? Anxiety is the most common cause of symptoms like yours.

 

[Dragonfly]

JK,

I've been twitching for about 4 months now, and a lot of your symptoms are like mine. BTW, my neuro confirmed my diagnosis of benign fasciculations 10 days ago.

My most active areas are legs and feet, particularly my calves, What really disturbed me was the vibrating sensation in my calves. Now that I'm not so stressed about it all, that has subsided quite a bit.

I also have had a lot of perceived weakness, and continue to have it often in my hands, but have found no functional weakness. Neuro strength exams all normal. Early on my legs felt rubbery, and that they might give out going down stairs. That was over two months ago, and now that feeling has pretty much disappeared.

Tightness in my calves is a regular morning occurrence when I wake up. The soreness goes away a bit once I get up and move around.

Given all of the clean examinations you've had so far, it seems you can be pretty much assured of having BFS, (not that I'm a medical expert).

Take some comfort in the posts about similar symptoms and experiences as yours in these forums.

Cheers, Heater

 

[furballfury]

I also have that feeling that my leg strength isn't quite there, and that at any point, I could lose my balance, have my leg give out, etc. Some days, even just walking feels "funny".

I visited a physical therapist once, and after a one hour work up and examination, I felt SPECTACULAR. Seems non-MND postural and stress things have been putting my musculoskeletal alignment out of whack, and the physical therapy helps greatly. Bottom line: you may not need to go rushing out to find some physical therapy for yourself, but just the relief of symptoms was as compelling evidence as I can think of that the onset of weakness and/or degeneration of muscle/nerves I had playing out in my mind (just got over my fear of ALS when this "weakness" brought back the fears of PD and MS) was just that: in my mind.

Any noted DR will tell you anxiety is a powerful force. You can make yourself weak to the point of immobility just from stress or fear in some cases. To the extent we dwell on our legs or arms or muscles in a negative or curious way, we are asking our brain to initiate processes involving these things that can produce real effects. My best guess is you don't have anything progressive, and life will go on. My best symptom days were the one when I found this site, and the one where I got my EMG back clean. I've had bad days before and after both. That alone speaks VOLUMES. BFS is tough to deal with but we'll make it through just fine - take it easy on yourself, enjoy the glorious life you've been given, and smile.

Hope that helps.