A long story... Can anyone relate to this?

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A long story... Can anyone relate to this?

Postby jacksburn on May 16th, 2006, 6:25 am

Newbie here. First a big thank you to the developer of this site, it has been really reassuring to know there are other people out there even remotely like me. I apologize for the length of this post – I am really frightened and need to get this off my chest.

I am a 34 year old male - always considered my self healthy before this. I hope that I have bcfs and not ***, and had almost convinced myself of this, but I have a few symptoms that seem to set me apart and it's starting to scare me to death. Although I had experienced some myalgia (muscle pain) since June of 05, my symptoms really began in early November. I'd been out with friends and drank a bit too much. This always produces a lot of anxiety the following day and this was no exception. What was different was that it didn't seem to ever go away and I soon started noticing that my legs were quite wobbly, I was starting to develop a tremor and my fore arms, shoulders, thighs and calves were very soar. Soon the anxiety turned into terror at my symptoms - I was convinced that something was terribly wrong with me, a feeling that has never gone away.

I went through a battery of tests and my doctor said it was stress related (I had 3 deaths in my immediate family in 2004, work very long hours, have a 2 year old who I care for most of the time and I am in the process of separating with her mother). I wasn't really sold on this so went to the internet to do some research of my own. I soon became convinced that I had MS, Parkinson’s or some other frightening affliction. I urgently requested that my gp send me to a neuro. She thought I was nuts but finally wrote me a referral. After a full neuro exam and MRI series showed nothing I began to feel reassured and my tremor seemed to disappear. About two weeks later I was lying in bed and the pain in my legs suddenly subsided and the fasciculations started. It was immediate and profound. They ran from the back of my calves to the bottom of my thighs at first - later they would become random visitors to other part of my body as well. At first I was happy as the pain seemed to have been greatly reduced - maybe it was "working itself out". Over the coming days/weeks as the fasciculations persisted and the pain slowly returned I began to grow concerned again. My right calf started to feel tight and burned up into the back of the knee and the bottoms of my thighs (above my knees) seemed tight and soar as did my fore arms. Back to google. This time what I found chilled me to the bone: the dreaded ***. Back to the neuro with the new symptoms. He gave me another exam and told me I was fine and not to worry about it. As I developed still more symptoms this instruction became more and more difficult and I scheduled another appointment. This time he mentioned BFS (which I had already come across on the net) he told me he had had these and that it took a clean emg to put his mind to rest and suggested I do the same. I have this scheduled for the 23rd and the waiting is killing me.

I've been doing a lot of self-testing lately (I know, bad thing to do) but I have noted that if I walk on the balls of my feet the right calf feels more weak, the heal doesn't come down all the way, but the calf muscle is obviously not supporting the foot as well as my left. My toes on this foot are also less able to resist pressure. It is also more intolerant of exercise than the other (like on a stationary bike) This is the calf which hurts most of the time, so this is really terrifying me. Could it be that the muscle is just fatigued from the nearly constant fasciculation and cramping or is this more likely clinical weakness?

Has anyone out there with bcfs ever had the cramping present before the fasciculations??? I feel like this is a really bad sign.

My worst cramping/aching sights are also my worst fasciculation sights - is this true of most people with bcfs???

With the cramping I’ve had symptoms for over 7 months now. Would I be seeing more profound weakness by now if it was ***?

Please respond if you’ve have similar onset – feeling pretty freaked out at the moment.

My other symptoms include:
>Fasciculations - obviously. They can be anywhere but like my lower thighs and calves the most.
>Cramping/aching hot-spots: forearms, right calf, neck muscles, shoulders.
>Soar/fatigued shoulders when they are raised to do really small tasks like combing my hair or holding a book up to read.
>Cramps in the middle finger on my left hand which make it stick out at a 90 degree angle toward my palm sometimes. Also left thumb is stiff occasionally.
>Ratcheting muscles everywhere.
>Frequent (nearly continuous) pain in my right calf.
>Buzzing sensations in my heels and sometimes in my fingers.
>Hands/arms fall asleep easily during the night.
>Heavy feeling in brow, mostly above right eye and at the bridge of the nose.
>Stabbing pains in my back near shoulder blades (rare and random).
>Soar neck muscles (new one)
>Wobbly legs off and on and sometimes feel like my knees are going to give out.
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Postby wjjw on May 16th, 2006, 6:45 am

This time he mentioned BFS (which I had already come across on the net) he told me he had had these and that it took a clean emg to put his mind to rest and suggested I do the same. I have this scheduled for the 23rd and the waiting is killing me.

Interesting, yet another neurologist with BFS. The disease that you're worried about does not start instantly all over your body. You had a normal exam, and the neurologist is doing the EMG for your peace of mind and for no other reason. Don't kill yourself worrying about something you don't have and instead focus on things like taking care of your 2 year old. You're going to be fine. Don't forget to post back with the NORMAL results on the 23rd.
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Postby puggriffey on May 16th, 2006, 8:46 am

If you are "in trouble", then I am too, as I have had every single symptom/experience you describe, down to a T. This is anxiety, deep seeded and more pervasive than you probably realize, and your fight or flight response is now in full effect. Once that happens, you can expect a whole slew of sensory and motor "symptoms", none of which represent what you are worried about and all of which are benign, if not extremely annoying.

The fasciculations settling into your achiest places is extremely familiar. My guess is you've been doing a lot of tip toe walking and walking on the ball of your foot. What happens is, when we are in full fight or flight mode, we do these self-tests to the "nth degree" and don't even realize it. When you do, you irritate and stretch these poor muscles who - until now - have not really been asked to exert themselves this hard in this way...not to mention the dying swan, hopping on one foot, fingertip push ups and hundreds of other self tests you'll find. Of course, the only one that won't physically aggrevate things is the calf or forearm or thigh measurement test, and that'll more than aggrevate you in other ways (mentally), so don't be surprised when your right calf is 2 cm smaller than your left, etc.

If you read my last posts (around December) when I went off to the Mayo Clinic with a whole slew of troublesome symptoms - MANY of which you describe here - I was sure I was a goner. Several months later, with health anxiety much better in control (but still a work in progress!) and all tests clear, it turns out none of them were anything more than my body wearing down under great stress and worry. I am confident you will find the same outcome, and hopefully this and other posts will help you skip some of the difficult steps/weeks along the way to reaching that same conclusion. You are fine - relax, and enjoy your day.

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Postby jacksburn on May 16th, 2006, 11:16 am

Thanks to both of you! JG - I just read through your series regarding your visit to the Mayo Clinic - nicely done and very helpful!

I will of course remain anxious until I get my emg results - and probably after that - but it's so reassuring to know that there are others out there that make it though this insanity. I will post the results when I get them back, probably on the 26th...

Thanks again and take good care,

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Postby mel on May 16th, 2006, 6:49 pm


i have all the symptoms you have, maybe in a different order, but ALL the same. have been told i am fine by gp, and 3 neuros. am going in for a emg on the 25th and will get the results that day. when you get yours we can celebrate the good results with a cyber toast :)

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