My Tale

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My Tale

Postby jw on August 19th, 2004, 11:43 am

Hello. My story began almost a year ago now. Bit involved, I'm afraid..

On holiday in Spain, I felt this weird sensation in my leg. I couldn't work out what it was, but it didn't bother me at first. Only it kept coming back. At the back of my mind was DVT (even though I'd travelled via Eurostar) - in my mind, it was like blood was flowing more slowly through my veins. A few days, I'm mildly worried... Then, one day, it's particularly bad. Because I can SEE it. Thumping away in my ankle, right where the vein is. I freak out, and suddenly I can't breathe. The blood clot's gone to my lungs, I'm going to die... Off to the local emergency room, there's nothing whatsoever wrong with me. I get a valium.

I know now that the sensation in my legs was actually my muscle twitching. Knowing that, of course, hasn't helped a bit.

It took a while to reach that realisation. The tightness in my chest didn't go. Now I had chest pain as well. I'm 25, but I was sure it was heart disease. Something really hard to spot, you know. The kind they don't discover till you're dead. A visit to the doc revealed I had something called costochondritis. Inflammation of the rib-cage. Leads to chest pain and sometimes chest tightness.

Did I believe her? Course not. She was missing something. I went to Casualty twice and to several different doctors. I had more ECG'S than any man in his twenties should ever have. All - you guessed it - normal.

Then I finally figured out what was going on. That pulsing feeling I'd had in my leg had spread - to my arms, my chest, my neck... All over. Hundreds of times a day I could feel - and see - parts of my body thumping wildly away. Thanks to the internet, I discovered fasciculations. And ALS.

Straight back to the doc. I insisted on a referral to the neurologist, and she - very patiently, considering how many 'complaints' I'd come in with - complied. I saw the neurologist, he did the exam, I guess everyone knows the drill... He was so unconcerned he didn't even bother with an EMG. BFS. Life goes on.

I didn't doubt this diagnosis. For six months I didn't even really notice the twitching. Then, a couple of months ago, it returned. I started noticing that my muscles were shaking a lot. Holding down the mouse button set off some mad twitching by my thumb. Certain postures make my arms and fingers shake. Twitching set into my neck. I hit the internet with renewed vigour. I devised strength tests - endless clicking, press-ups.

And now, the latest chapter. My breathing difficulties have come back. It's like I can't breathe in fully, like someone's either sitting on my chest or squeezing my neck, or sometimes both. I have the constant urge to yawn. What do I have? Respiratory ALS, for sure.

I know, deep down, it's unlikely. It seems impossible to have been twitching almost a year, all over (with the occasional hotspot), experienced no real loss of strength (if I'm honest, although I'm constantly deceiving myself about this)... and to have had a breathing problem that hasn't, in all that time, become noticeably worse.

I know, too, that it's almost certainly anxiety related. My first symptoms appeared when I was due to fly back from Spain - my first flight in years. It's something I hate, and pathologically fear. My latest bout of madness has returned also in conjunction with a lot of flying.

But the other part of me says it's too much of a coincidence that I have costochondritis AND BFS - that it doesn't make sense to feel this way just because of something as vague as 'anxiety' - and that maybe I should've just had that EMG after all... It's got so bad recently it's hard even working, and things are going well right now so I don't want to spend my entire time on the 'net looking at 'symptoms' lists.. :D

So that's me. Thanks for listening.

J
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Postby Stephanie on August 19th, 2004, 12:40 pm

First of all DO NOT EVER GO ON ALS SITES. EVER! You will never gain anything but more anxiety. If you look up any disease you will always find some symptom you can relate to and freak out. The chest tightness and difficulty breathing is COMMON with anxiety. Most of us have had that from our own anxieties and feared the worst (me included). Just stick to this website and one on anxiety and you'll see that you're ok. After a year you would be in a wheelchair or close to it w/als. Believe the neuro--he knows what he's doing. If he had any doubt he would tell you. Get the emg for peace of mind and then focus on your life again.
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Postby jw on August 23rd, 2004, 10:29 am

Too right. I have to say, even just writing it all down made me feel better. There's something about seeing the lunacy in black and white.. From now on, whenever I get the urge, I will endeavour to come here rather than ALS sites.. They have internet blocks for adult content; maybe they should invent something for hypochondriacs? Every time you type in a list of symptoms you get diverted to a happy page. Just a thought. 1 year twitching today..

J
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Postby amy_twitch on August 23rd, 2004, 12:35 pm

Welcome JW,

You are in familiar territory here--we can all empathize with your symptoms! I've had two of my own anxiety driven ER visits. I was diagnosed with hyperventilation both times I went. I never thought for a second I was breathing funny. However, you can indeed hyperventilate without knowing it.

Your anxiety could be in-part to your rib-cage inflammation. You might be doing a lot of chest breathing (instead of breathing with your diaphragm) which can cause this type of hyperventilation and anxiety symptoms. I swore I was having a heart attack or had some type of aneurysm because I was so light-headed and couldn't breathe. Not the case, of course--and the folks at the ER said 'other than having anxiety' I was a perfectly healthy 29 year old.

There's also a book called 'the anxiety disease' that I read. It discusses a lot of good info about anxiety--but the part that interested me most was that it gave a breakdown on when anxiety strikes. The most prevalent time for anxiety to strike is between the ages of 25-35....so it all makes sense. Learning all you can about anxiety will help you manage it--you won't stress as much when you start to feel 'out of sorts' and you'll be able to ride out the spells instead of heading off to the ER. A year later, I can do it--piece of cake. I also have xanax to take on my worst days. I haven't popped one in over two months now.

Back to your chest inflammation....have you had your ANA tested? Your docs probably would have already looked into this, but I know that chest wall inflammation can be linked to some autoimmune connective tissue issues. I don't know that your condition is linked, but it might be one thing to rule out. There are a handful of us here, including myself, that have had positive ANA tests...but I think for all of us, they were of no significance. Positive ANA is also fairly common in people with chronic fatigue syndrome and fibromyalgia.

Also, I totally agree with Stephanie...get the EMG. I had it too (though all my docs said I didn't need one) and I'm so happy I did it. It takes away all the 'what-ifs'. Best wishes to you, and keep us posted!

Amy
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