Update on Strange Symptoms

[kylespike]

So, I dont know if any of you remember my posts from before, but I just wanted to update you all.I had some very strange symptoms dating back to September of last year. Suddenly generalised fasciculations came on along with a general feeling of weakness. I saw my GP and he said it was nothing to worry about but referred me to a neuro. Well I had to wait several months for my appt but I've finally had it. She seemed to imply it is all in my head. I passed all the manual tests she did; touch my nose-touch her finger, reflexes, walk on tip-toes, walk on heals etc. She tested my strength and said im strong. However I did feel she was rushed and didnt want to listen to ME. She was more concerned with attributing everything to anxiety.Since my original post my right calf has got worse. The gastroc muscle at the back now seems flat with a little bit at the bottom that sticks out significantly when I tense the muscle up. When I measure and compare the left and right the measurement are the same (measured while the muscles are relaxed). When the calves are relaxed they look identical - but when they are tensed, quite frankly my right calf just looks odd - sort of like a sharks back with a fin sticking out at the bottom. After I have walked for as little as 5 minutes my right calf starts to really hurt. When Im walking i've noticed that my weight is falling ove on to the big toe side and it kind of feels jelly-like on my right foot.My fasciculations have continued to be generalised - certainly no more in my right calf than anywhere else. I still feel generally weak. My wife is convinced that I walk stiffer now and that my weakness seems to come in definite waves.I seem to have so many symptoms that I just dont know wher to begin. My doctor thinks I'm a complete hypochondriac (spelling?) I'm sure, and the way he looks at me and sounds exasperated whenever I see him just makes me want to curl up and just say nothing. But my symptoms are very real. The worse bit for me is just this horrible 'irritated' feeling I get in my legs when I walk - I dont know how to explain it any other way (tingling? humming?). Also my legs feel on the virge of cramping up but they never get that far, couple with a sensation of running cold water+burning sometimes.Just this week i've felt kind of short of breath and I've been catching my tongue while eating or talking - this happens when I have my 'waves' and then can go again as fast as it came.I'd love to hear from anyone who gets similar symptoms. Naturally Im terrified about ALS as I have an 8 week old baby girl. I'd also like to hear from people in the UK to find out how I get a second opinion

 

[occasins]

Your doctor is probably right, since nothing you've mentioned seems beyond what is common among those of us who suffer this. Something in your back messed up can hurt all the way down to your foot, and cause numbness, and even wasting. Since the physical component of this is evidently a nerve problem, you should probably expect to experience problems only where you have nerves. (I assume your teeth aren't twitching. Now that WOULD be something new.) Walking on the side of your foot is over- or underpronation and has lots of reasons, some as benign as the wrong shoes.I respectfully invite you to consider if your awareness of your body is not exaggerated. Do things like measuring your body parts strike you as just a wee odd? (Not that we haven't all done it.) Sometimes -- and I don't know enough about you to say you are doing this -- we get into little rituals of reassurance like OCD sufferers have. I have read up on OCD and it looks to me like that fits the non-physical part of my problem. Do you ever feel very restless until you just "have" to do something to reassure yourself? This is very like people who feel they must constantly wash germs off their hands, I think. The only difference is that our discomfort is triggered and prolonged by actual physical problems that have become psychologically linked to fear in our brains. If we don't measure our leg, or look at our tongue, or whatever, we may "get it."The trouble I run into whenever I compare my body parts between each other is that depending on how a limb is positioned, the lighting, whether my socks have been too tight, how I've sat all day... they can look very different from one another. As many, many people here have observed, everybody's right arm is different from their left to a greater or lesser degree. We aren't cast in a mold like GI Joes.If you saw a doctor, I imagine that involved a cursory clinical exam of SOME sort. When we look at ourselves, we are doing a clinical exam on ourselves, really. Only without, you know, any education or training and with a monkey inside our heads screaming WE'RE GOING TO DIE!!! I don't know about you, but I'd probably go with the doc on this one.

 

[Krackersones]

My symptoms were dismissed as anxiety by the first neurologist I saw after he did an EMG and nerve conduction test and found no problems. Several months later I had a muscle biopsy and nerve conduction tests show evidence of denervation and severe abnormalities of 6 out of 7 sensory nerves. I also had ANA and immunofixation tests that showed abnormalities at first and then normal results on follow-ups. Because my persistance eventually led to objective evidence of my complaints, I am no longer dismissed by doctors and treated much differently.

 

[kylespike]

I do appreciate your input occasins, but I have restrained myself and stayed away from here since I originally posted purely because I didnt want to obsess on this. I have given it time. While I havent seen a massive decline (which one might expect with something neurologically serious) in the 4 and a half months since this began I also havent seen any improvement. My calf is definitely worse and thats what concerns me. It didnt used to hurt when I walked it was just a niggle at first.Well im gonna have a Nerve conduction study soon and an EMG so guess I'll know for sure. My sister actually thinks I have BFS plus Intermitent Claudication in my calf. Is there a link between BFS and vascular disorders? Gonna have to go back to my GP now and convince him to refer me for a doppler. Joy.So for whining but I really dont want to off-load this on my wife. She knows im terrified and I dont want to make things worse for her.