A Year of Twitching: Reflections

[WolfgirlWolfrider]

Hello all and thanks for taking the time to read this. It's been a year now since I started twitching, and I have been doing relatively well. I know that with a year in, I should be reassured and feel pretty good, but just lately, I feel like I've allowed some old fears to creep back into my brain. I still twitch just as much as ever (constantly in my calfs and foot arches) and random pops everywhere else. I've had a few hot spots (bicep and quad) that have lasted for a few days each and thankfully quit. I have a few questions and observations I'd like to bounce off you. Here is what I have that's scaring me..... still twitching and cramping in my feet. I feel like the cramping has gotten worse. I use to be a competitive swimmer, and I still like to get in the pool from time to time. Lately, it's been very hard for me to swim laps at all without causing my toes to go into curling under cramps. The combo of the constant twitching of the feet and calfs, along with the cramps has allowed the A## fear to creep back in. Also I've noticed a large increase in the amount of eye floaters at the same time I started twitching. I've been to the ophthalmologist who found nothing wrong with my eyes and said they were benign and I'd learn to live with them. And finally, I feel that my ankle jerk reflex is very sensitive. I know I don't have the training to assess myself, i just feel my reflex happen when doing things like riding in a car and going over a bump when my foot is flat on the floor, or sitting at a bar and having my toes on the bar, and someone else hits the bar, and it makes my foot jump. the neuro didn't say any of my reflexes were abnormal though. Here's what I think should give me reassurance. 1. I'm 35 years old.... I know A## can happen in my age group, but it's highly unlikely. 2. I've been to a neuro who found no weakness and I passed the exam.... He has told me several times that twitching starts after weakness.3. I have twitching with no noticeable weakness.... Although I'm guilty of self testing and occasionally talking myself into thinking I feel week, I really don't think I can definitively say I notice any weakness. Twitching with no weakness is good. 4. I've had a clean emg.... My neuro reluctantly gave me an emg of both calfs and feet when I was several months into twitching and he said it was textbook normal. 5. I've been twitching for 1 year now.... I hope I'm correct in assuming that if I did have A##, that I'd be FOR SURE seeing serious weakness after a years time, and since I'm not, i should be reassured. I guess I'm just looking to make sure I'm correct in these things and get a little reassurance during this small relapse of negative thinking. Thanks in advance.

 

[sirdevil]

Hi there,I could have written ALL of your symptoms as if they were my own: the constant calf and foot arch twitching, the cramping of my toes and curling under, especially during exercise, other random twitches in various places that pop up now and again, are short lived, but none the less are worrying when a new spot suddenly starts going off. Similar to you, my right quad was wriggling around for 3 days last week and then it stopped and only randomly pops now.It's great that you have gone down a list, logically showing that for all those reasons that you list there is almost no chance of you having what we all fear most. In my moments of fear and panic I too go through a similar list in order to calm everything down and be more rational. I have to say, despite knowing that self-testing can be counter productive (straining and injuring normally working limbs etc). It's only natural to self test, after all it's the most immediate way we can give reassurance to ourselves and proves that our body is still working despite our minds pushing fearful ideas to the fore. I find myself at work walking on my heels or toes when no-one is looking, ridiculous though that is, but it helps sometimes. You're a year on, you have a normal neuro exam, you have a clean EMG under your belt and you have no weakness. Your diagnosis is made! You have BFS and yes you should be reassured, completely. I don't think there is a neurologist on the planet that would think it could be anything else. I really hope you can get on with your life, free of fear and live it to the full albeit with a few annoying symptoms that I and many others here fully empathise with. Please don't take this the wrong way, but it is good to hear that you have identical symptoms as me, but for 7 months longer than me and that you remain strong. This gives me reassurance too and I suppose it is why many come to this forum as by sharing our experiences we can be more reassured and less anxious. I thank you for just saying how it is for you and being candid about your anxiety and fears. It really does help others.A couple of responses to the other issues you raise. Firstly, even if you do have them, floaters in the eye bear no relationship to any neuro-muscular condition. They are simply protein or cell debris in the vitreous humor and are common in all adults and rarely significant. However, my guess is that once you started noticing your twitching, then your awareness of other aspects of your body is much higher and things which didn't bother you previously become more obvious. I noticed all kinds of things which I thought had also just started, but others around me assure me were either there before or unchanged. Our minds can play tricks and games with us that we really don't know what it real or not. I've started to keep a symptom diary to help me keep track!In terms of reflex testing: firstly, it's almost impossible to accurately do this to yourself, especially using a crude measurement such as your feet resting on the floor of a car! You will also notice that any decent neurologist will use a specially weighted tendon hammer with just the right amount of flexibility in it and will use the same force behind any hit that is carried out. The reason for this is to ensure that there is consistency in eliciting reflexes and so symmetry can be ascertained as well as comparison between clinic visits sometimes months apart. If you hit your knee with a large rubber mallet you will get a much greater response than with a tendon hammer! Likewise, the jolt you get through the floor of a car going over a bump is a much different force on your foot as well as it being the wrong place to elicit an ankle jerk.In spite of your on-going symptoms, I really hope you can enjoy your next year on with reassurance and free from fear.

 

[SwiftStar09]

Thanks for sharing and like surferguy I too find some reassurance in reading your symptoms. My twitching started about 20 months ago with a clean neuro exam and EMG just like you. I find myself self-testing even doing headstands with my daughters . I've posted recently about cramps even aching pain in my feet along with the constant twitching in the arches. At the time of my neuro exam I had only experienced one foot cramp prior so now do sometimes fall into the same trap of doubts and those fears creeping up. What would the neuro say now, is this normal BFS progression, etc? It's a terrible roller-coaster ride I just want to end. Thanks for posting as this forum does offer peer support as only those that have experienced similar symptoms can really understand what we're going through! I hope you continue to swim and not let a small relapse bring you down.