Fasciculations - 56 Year Olds.

[biofuel555]

Hi folks. I'm 56.  2 months ago, my wife, also 56, noticed a fasciculation in her thumb which has progressed to bilateral calf, foot, buttock, and to a lesser degree, abdominal twitches with some calf cramping. No weakness. Neurologist was not impressed, no EMG done. About 6 weeks after her symptoms started, I began to have fasciculations, mostly right calf and foot, but also bilateral (left leg, foot), and some in abdomen and now arms. I also have cramping, mostly in feet and R calf. My feet also hurt upon standing/walking, I believe similar to plantar fasciitis. Neither of us have any objective weakness; we've done every conceivable strength, balance, heel, toe walking, foot drop test, etc. I haven't had an EMG either, but was told by a trusted neurologist friend that it can change from negative to positive.Any thoughts on the above, and the possibility of a viral or toxic explanation for our symptoms occurring within weeks of each other? I've read about a possible viral cause of BFCS. Thanks.

 

[Gracer]

Generally it could be a virus...if you both had a symptomatic flu... but there is also a lot of people here who share the family experience of BFS/twitching, I mean if they or their partner twitch, the other partner sometines develop twitches too. It looks like it is a kind of ''infectous twitching", but for me it also looks similar to well known yawning phenomenon (being in the company of yawning humans or even pets induces yawning)... so I think, also probably it might be your "mirror neurons" or whatever causes us to mirror our vis-a-vis involuntariliy and sometimes even unconsciously...In my family it was my daughter - she complained for arm twitches while I was already in BFS for few month (however her twitches were clearly stress related and now she does not complain for it) - but it was a bit funny - she was punching me for fears and bad thoughts, and when I finally find my peace of mind, she started twitching herself!!!

 

[GHayes420]

The only toxic cause of neurological symptoms like you claim would be some kind of organophosphate poisoning. Did either of you work outside with fertalizers or chemicals?A viral cause of BCFS is a hottly debated topic. Many many people here will claim that their BFS started after fighting or while fighting a virus of some kind. Other viruses remain dormany in our bodies, like herpes or Epstien Barr and only show themselves when they want to. The question abotu EMG change is a sensitive one, so I wont go into detail too much here, just know that a change on an EMG like your buddy claims is very rare and not usually seen. An overwhleming majority of people on this forum have not had EMG's because, like your wife's neuro, they didnt feel it was needed (and technically it really isn't). The EMG is more of a predictor of what's to come more than just a picture of whats already there. They are extremely sensitive and usually very accurate. Of course nothing in medicine is 100%, that is just common sense. Good luck in finding out the cause of your symptoms and welcome to the site.

 

[biofuel555]

Thanks, GMayes20 and Gracely for your quick and insightful responses.We live in Florida and may have been exposed to organophosphate pesticides sprayed in the house; it's a possibility. I also had documented Chronc Fatigue Syndrome 20 years ago, so dormant EBV could be reemerging.I tend to agree with the many here who have not rushed into having EMGs, for the reason you cited, so we'll probably wait this out, hoping that objective weakness/atrophy don't emerge.  This brings up the issue of how long to wait.  Question 1: I've seen estimates elsewhere, but any opinions on when to stop worrying/waiting for objective weakness/atrophy to begin after fasciculations and cramps have begun?Question 2: Anyone experience calf cramps while lying down which stop upon flexing and then resume right after stopping theflexing?Finally, I'm an M.D. myself, and I'd like to thank everyone here for their concern and in-depth knowledge.  Many of you clearly know more about these matters than do many neurologists.  Best to everyone.

 

[jsageurge]

There have been a few cases posted on this site where both spouses developed bfs-like symptoms. In particular, Medusa13 (christy) and her husband both developed this at the same time as you did. I recall her being convinced it was due to pesticides. She does not post here anymore, but is doing well now. Regarding question 1, my answer would be to stop worrying right away! Especially in your case, where you both seem to be having a systemic reaction to something, rather than a rare and simultaneous presentation of anything requiring you to worry about atrophy and weakness!Regarding question 2, I assume you mean dorsiflexion of the foot? Most of my calf cramps, even prior to BFS worked this way, and I needed to eventually get up and walk around (in pain) before it would resolve.Cheers,Bill

 

[GHayes420]

The two questions you bring up will no doubt bring up different responses from different folks based on what they were either told, or based on what they have been through, or what they have read somewhere. So my answer to you question may not be the same answer you will get from everyone else. Question 1: I've seen estimates elsewhere, but any opinions on when to stop worrying/waiting for objective weakness/atrophy to begin after fasciculations and cramps have begun?The best answer to this question would be "right now". Because if you let it worry you, BFS will drive you to very dark places. Honestly, I am not in the best shape mentally because of this at the moment. But I am aware of the problem and working on the underlying health anxiety. From a medical perspective, the baseline that always has been told to me is 3 months. It is exceedingly rare that fasciculations are the very first sign of MND, and when and if they are, then weakness sets in very quickly after they begin. If the fascicualtions are nerves dying (ALS) and not just irritated (BFS), then the weakness usally always follows very quickly as they cannot keep up with the innervation/denervation process. Again, you need to keep perspective that this is a rare presentation of an already rare disease. When you throw in the fact you both started at the same time, then you can pretty much get an thought of MND out of your mind. Question 2: Anyone experience calf cramps while lying down which stop upon flexing and then resume right after stopping theflexing?I have not, but I know that numerous others on this forum have experinced calf cramping.Glad to meet another doctor that we can educate on this condition.

 

[biofuel555]

Thanks again, guys! Bill, the medial calf fascic temporarily stops upon tightening my calf muscle by any means; just tightening it or by moving the foot in either direction.Thanks for the reassurance on couples somehow getting closely-timed BFS or BFCS.Yes, more doctors should avail themselves of intelligent patient-driven forms like yours.

 

[Gloria123]

I find this so fascinating. I have read of a few people on this board that have had a spouse also develop symptoms, definitely more than once. This really makes me think, that at least in some cases, if not all, there is some sort of environmental factor involved, especially if your symptoms are happening close in time to each other.I just found out that I have toxic mold in one of our bathrooms at home, and for a fleeting moment at least, wonder if it could be causing my twitching. We are in the process of having it fully inspected, and then remediated, so it will be a while before I can say whether this is related in any way to my twitching. But, I did a search on here, and saw at least one post where someone claimed their symptoms were seriously reduced when the mold issue was taken care of in their house. If you think about it, stachybotrys (black mold) causes aggravated allergic symptoms, asthma, and potentially even more harmful respiratory illnesses. If it can aggravate allergies - and there are theories that BFS is autoimmune related (like allergies) you really never know. However, in the past year, I have been suspect of just about everything in my life, causing BFS. Everything from anxiety, to benadryl, to gluten, etc.I don't think many, if any, studies have been done in potential environmental factors in BFS. Studies are really lacking in this area, but in my opinion, you and your wife can cross anything sinister off your list (as everyone else had said).I hope neither one of you are too worried, and the positive side of this (although I don't wish BFS on anyone) is that you have instant support!! Mitra

 

[biofuel555]

Thanks, Mitra. Yes, I'll be getting our house tested. I wouldn't expect too many studies on this condition, being that it's benign, not all that publicized, and perhaps not viewed as a big money maker for pharmaceutical companies. It would be helpful to attempt to find out the approximate number of sufferers.Thanks again; best to you.

 

[biofuel555]

Update: Negative EMG/NCVs for both of us. Two comments on this:1. My fear of the pain of the procedure was totally out of proportion. My neurologist friend performed it using state of the art thin needles and I felt practically no pain; less than a blood draw.2. After our good test results, my symptoms diminished by 95% within 24 hours. The mind is an extremely powerful thing!I had an equivocal Lyme result, and we have done a lot of traveling, so we're going to look into that with a "LLMD" (Lyme Literate M.D.). Finally, we'll be testing the house for potential culprits.Thanks again to everyone; wish you all the best.

 

[Gracer]

hello, thanks for sharing good news and especially good was to know that you felt much better after clean EMG.

 

[GHayes420]

Great News BIofed. Please let us all know if you find any culprits in the house. This subject interests me. I am retesting Lyme myself as I was bitten by a tic one month before this all started on a trip to Missouri. Although the first Western Lyme Blot test I took was negative. Congrats and good luck....