First BFS Encounter: Four Years On

[occasins]

February marks the occasion of my first life-damaging search-engine hit. Back then it was arm weakness. (Which is mostly hand weakness.) Followed by my rubbery right leg (which is more rubbery than ever). And, of course, twitching. Everywhere.I don't know what the point of this post is, really, except in being able to post it four years later.That feels sorta good.Even though BFS still sucks.

 

[simonw00]

Hi occasinsHappy 4th anniversary! Thanks so much for your post... really helpful. I have no logical reason to believe I have anything other than BFS (4 months fascics, no 'true' weakness, normal neuro exam and a normal EMG) but my rubbery R leg has just caused me to stop what I was doing and do pointless exercises to prove and reassure myself that today isn't the day that I got to prove my neurologist wrong and present with 'proper' weakness. Naturally, my pointless self testing exercises were normal... after all I did walk for 20 mins up hill this AM to get some exercise and once again prove to myself that all is well. To hear of someone who also has a rubbery leg and who hasn't progressed to get some awful neurological condition is immensely reassuring. I can't believe that a sane logical and supposedly intelligent family doctor (i.e. me!) should be unable to finally 'let it go' and accept that my symptoms are truly benign. It is reassuring to know that I am not the only such person who feels this senseless anxiety. It is more reassuring to know that there are people with my condition who are living proof that it really all will be ok!Greetings from New ZealandSimon

 

[occasins]

Well, here's a doctor taking medical advice from a lawyer. If that can happen, there is hope for world peace!In my lucid intervals, I think my leg problem is sciatica. I have been driving long distances in my Mini (comfortable, but manual transmission) and sitting in front of a computer for long stretches (always one of the usual suspects when anything goes wrong with me). I often have pain down my leg, which makes me very happy. I also know my leg rotates out at my hip due to displacia. Around Christmas I turned my ankle and since have experienced pain inside my heel / ankle, where my Achilles tendon goes into my foot. As a consequence I notice I walk on the outside of my foot, which is causing shin splints and other symptoms (such as fatiguability) in my leg.I think this Rube Goldberg picture is emblematic of a condition that is probably very complicated and subtle (in my lay opinion). I don't necessarily believe everyone here has the same cause for their symptoms, which is one of the problems with finding a "cure." I think BFS is a flag of convenience for a constellation of varied symptoms and could as easily stand for Bizarre Freakin' Stuff (feel free to substitute more colorful language).

 

[simonw00]

Thanks for your reply occasins. Much appreciated and I share your sentiments. And I share your sense of humour regarding the doctor/ lawyer thing... will I expect a bill?!?!?Kind regardsSimon