Flash (new member) - Tale of the Dying Swan & Other Stor

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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Flash (new member) - Tale of the Dying Swan & Other Stor

Postby Flash19 on August 4th, 2003, 11:59 am

Hi there! I am male 33 years old living in Aberdeen, Scotland. I have been a hypochondriac since the age of 8. Don't get me wrong - I'm not suggesting that BFS is caused by hypochondira (in fact it may be the other way round - I'll get to that later). To put this in perspective I've been almost constantly terminally ill with just about every terminal disease for 25 years. AIDS (1991-2000) was a major highlight.

Typically my terminal diseases have taken the following course:

1) Be exposed to information about someone that has a terminal disease.
2) Develop those symptoms within a week or so.
3) Research more symptoms (and wasn't the Internet such a boost).
4) Develop additional symptoms.
5) Worry for months.
6) Tell my mother, hypochondria runs in our family.
7) Visit the doctor.
8) Experience spontaneous recovery, sometimes after undergoing medical tests, but often because some other disease has me more scared.

Then I started to twitch. The good thing about BFS is that you are never 100% sure that it isn't really ALS, that this isn't an incredibly rare and slow onset. Even the tests aren't conclusive. What a bonus!

I first started to twitch in late 1991. I started to twitch shortly after reading a magazine article about someone with MND (as it's known in the UK). The guy in the article noticed some muscles on his leg moving by themselves and it turned out he was dying. Within days muscles in my left thigh had begun to twitch. The good news was that my recent case of methomelanoma went into instant remission. Again.

Anyhow, and this is remarkable for me, I decided that I didn't have MND because I had heard that it was heriditary. Amazingly it didn't occur to me that I was unaware of how my great grandparents died (and I still am, thought have since jumped to the obvious conclusion it must have been ALS/MND for at least one of them). So with that my MND went into remission for almost 10 years.

In December 2000 I started waking up with really sore, numb wrists and hands - like I had been sleeping on them. The pain would wake me up. This happened every morning. The pain would subside into pins and needles before the hands returned to normal. The hands felt weaker and fatigued. They tired easily.

Then while recovering from AIDS in early January 2001, having just been given a clean bill of health following congestive heart failure (caught off the TV), I was watching a documentary on Stephen Hawking. This was when I learned that ALS was not necessarily hereditary. That very night my left thigh began to twitch, and continued twitching almost constantly for a week. On day 3 it was joined by my right thigh. Then later in the week my biceps.

The disease progressed remarkably swiftly. Pretty soon every part of my body had spent at least a few hours twitching. Even my manhood (all 2" of it) twitched. At any given moment part of my body would be twitching, often violently. One afternoon - while I was worrying about it, my legs and feet began to twitch and spasm like I was bouncing someone on my knees. All by themselves.

Whoever said that this only happens in relaxed muscle must have a broad definition of relaxed. What they really mean't was that it happens in muscle that isn't under significant load.

Then came a pivotal moment, about 2-3 weeks into this ordeal. I was in a pub, waiting for someone, and started to read the paper. In the paper was this personal account of an England rugby player who had developed ALS. One of the first things he noticed was the twitching. Twitching just like mine. All over his body, spreading very fast. I went to the toilet and crapped myself fore the next 30mins. The twitching got worse.

So guess what I did next... Yup I dug out my weights and embarked on a 12 month exercise regime. This included:

Swimming a miles 3 days a week.
Cycling 16 miles twice a week.
6 days of lifting free weights and using the multigym, for 1 hour each day.
One of those electronic belts that do the stomach.
High protein diet.
Creatine Monohydrate.

Needless to say I got very strong. I also discovered that the creatine helped a lot with the twitching. So I gained confidence. It must be something else, not ALS. Time to surf the web and find out the truth.

So in April 2001 I typed "twitching muscles" into Google. Guess what I found...

Hundreds of references to ALS. I noted that creatine was being touted as beneficial to ALS sufferers. This necessitated another lenghty visit to the crapper. A couple of footnotes mentioned the equally rare condition of BFS. The BFS description said that twitching is only ALS if it's accompanied by muscle wastage. So I dug out my measuring tape. That's when I discovered that the circumference of my left calf was 14", whereas the circumference of my right calf was 11". Another visit to the toilet. Then back to the tape. My left bicep was way smaller than my right one. My left thigh, the one that had been twitching the most also seemed noticably smaller. Back to the toilet again.

Ever tried to look at your calves in the mirror froim behind? Stupid question. Here's where I invented the routine that my wife refers to as the "dying swan". I would stand on one leg then try and go up on tiptoe (all 200lbs of me) whilst looking into the mirror over my shoulder, with my arms flapping about trying to balance.

The twitching continued. Also through constant over exercising, my muscles became bigger but ultimately weaker. My left bicep increase in size then reached some sort of brick wall. My right calf refused to develop and became painful the more I pushed it. I had initially gotten comfort from the weights because they demonstrated that my strength was improving, but ultimately I go worried when improvements became non-existant and I sometimes failed to match last weeks performance.

In March 2002 I bought a bar. I should mention that I have been self employed since 24, and built up a sizable IT business. I used the profits from this to purchase my home outright, rebuild it to my specifications, and then purchase the bar. In the meantime I have never had a holiday and work an average of 70 hours per week. On top of exercising. Doh! What's this work related stress thing - I've never encountered it?

So I bought the bar, in addition to my other business, and then my right calf got really sore. The left one wasn't much better. This may have been caused by standing up all weekend while working at the bar. Of course I knew deep down that it was caused by ALS.

The 18 month mark was reached in July 2002. Surely I didn't have ALS after all. Then I opened the local paper. Here was a personal account by a guy that had had ALS for 2.5 years. He was in a wheelchair, but upwardly mobile. His ALS didn't get much worse that mine until the 18 month part. His first symtom was pins and needles in his hands. Instant visit to the crapper.

This incident occured late at night as we were cleaning the bar. I owned a Toyota Hi-Lux pickup truck that I had spent £10K customising. I was scared and upset. On the way home my left thigh was doing that little twitch thing on the inside just above the knee. It wouldn't stop. I drove faster and faster trying to shake the anxiety attack coupled with "Why me?" anger. As I entered the sharpish right hander at 70mph, aiming for flat out I was thinking "but the human body is capable of incredbile subconcious tortures... things like flase pregnancies". The rear wheels lost traction...

...then the front wheels also joined in the skid (the truck was 4wd). I was all over the wet road, still doing 70mph, careering out of control. The truck went up of 2 wheels. It spun round. I was now going 70mph, in the same direction but backwards. I knew I was going to die. Things were happening in slow motion. I saw the wall coming up in the rearview mirror. No way was I going to survive a 70mph collision straight on into a wall.

I told God to kill me if I had ALS.

The truck caught the wall at an angle and demolished it. It then passed through a streetlight taking that down. The collision was incredibly violent. I had the seatbelt on, and it tightened right up on me. The steering wheel was yanked out of my hands. My head hit the roof of the truck just above my right temple. I didn't pass out, but it was a nasty bang (nothing like a fracture though). The truck stopped. The rear end was concertina'd right up. She was so twisted that only 3 wheels were left touching the ground. Diesel was puring out the fuel tank. All the power was cut.

I was alive, but I did have some trouble believing it, so did the first car on the scene, they had witnessed the crash from a distance, they were more shaken than I was. I was elated. I didn't twitch again for another year... that time is now.

I had almost forgotten that it was like to twitch. I had almost forgotten how scared I had been. I had even got used to the fact that I didn't have ALS. I had even survived another bout of congestive heart failure, plus 2 cancers and CJD. Then 3 weeks ago my left thigh started twitching again. The rest of me quickly followed. Obviously my ALS had been in remission. My calves got sore again. My thighs got sore. I could swear the left thigh was smaller than the right one. Last Saturday morning I was tightening a little screw into a plastic electrical plug. My had got fatigued and felt like it was made of concrete. I couldn't hold the screwdriver. Another visit to the crapper.

Last night (Sunday) I decided to go on-line again and look up this condition, but in a positive way. I typed "benign muscle fasiculations" into Google and after correcting my spelling it coughed up a few terrifying links on ALS, plus 2 links on BFS, and this site was one of those.

Reading the new information (to me) about how muscles becoming fatigued and sore brough happy tears to my eyes. Reading how other people had twitched, often violently in every part of their bodies helped too. My twitching reduced 80% over the course of the next hour. Yes alcohol and caffiene make it worse. Yes creatine makes it better. Yes thinking about it makes it worse. Yes I do have a slightly elevated liver enzyme (not sure which one, the test was done prior to a course of Lamasil I took for damaged nails just before the twitching started, but one enzyme was elevated, I had assumed this was due to alcohol). You all did the exercise and weights thing. You all examine your bodies looking for atrophy. You probably all spend a lot of time shaking on the crapper.

I woke up this morning convinced everything was going to be fine. I didn't have ALS. I waited for my membership confirmation to come through, so that I could post this account...

Then I read Carol's story. Remember I'm a hypochondriac. I visited the crapper.

Now for some summary and input:

I first twitched almost 12 years ago, but only for a week. Then it came back 2.5 years ago for 18 months. Now it's back again.

10 years ago I developed a problem with my throat. I don't know why. It got tight and I couldn't swallow. I didn't associate it with ALS. It lasted a month or so and went away. It obviously wasn't ALS. At least I very much doubt it, given that it's cleared up. The point is that if anyone develops a problem with their throat, then please take into account that such things are possible without being ALS related - even if you are twitching. Especially if it occurs within a week of reading that last bit and thinking "I hope I don't get that throat thing that Flash had!".

Another point. I genuinely suffer from 3 other syndromes:

Cluster headache syndrome. http://www.clusterheadaches.com. I'm a legend there, look for shroom therapy and you'll discover why. Please note that CH is no longer considered a syndrome as a physical deformity of the hypothalamus in the brain has been discovered, apparently common to CH sufferers. I developed CH at 16, thinking it was a brain tumour. I know what pain is.

Irritable bowel syndrome. This doesn't bother me much any more.

Mitral valve prolapse syndrome. This is the true cause of all those heart attacks, congestive heart failure etc that I've worried about. The doctors have twice examined me in hospital, and concluded there is nothing wrong with my heart... except that it beats around 120 per minute and is as regular as a timex with a duff battery. MVPS differs from MVP in that the hypochondriac exhibits all the symptoms of MVP without actually having a prolapsed valve. Look it up.

Is this coincidence? Is it down to hypochondria? No I don't think so. Seriously. What I do believe is that some of us are put together differently, and from comparing notes with other people it is common to have more than one of those uncommon syndromes. In other words some humans are just a little flawed. A different type of healthy heart, muscles that move by themselves, a head that gets so sore you scream and bang it on the floor threatening to kill yourself... only it doesn't cause any lasting damage - the headache that is:) Guts that drop when you least expect it, and don't then you think they should. See where I'm coming from?

I believe that early onset hypochondria, the type that others in my family have suffered from is as a result of being put together differently, but in a trivial way. Hypochondria is listed as a symptom of both MVPS and BFS. Others in my family have been affected by IBS, migraine, and even CH (I only found out that 10 years after I developed CH).

What about my perceived atrophy? Well I was never very symetrical. My face looks very lopsided, and my head feels like I was stepped on at birth. My testicular cancer was caused by one testicle being much larger than the other. As you'll have realised by now, this one cleared up after my (unfortunate) male doctor spent 15mins groping it.

Some positive things have come out of it:

I got a new car... with the insurance money from the one I crashed :)
I took the plunge and bought a bar.
I am learning to play the saxophone before my hands turn to claws.
I live like every day is my last, but spoil it by worrying that it might well be.
I reduced my drinking and caffiene intake.

I hope that someone finds my story reassuring. I'm glad that I have been twitching for 2.5 years now as opposed to 2.5 weeks.

Do you think I'm really going to die? Please reassure me that I don’t have ALS. I’m scared to visit the Doc and ask for an EMG – it wouldn’t prove anything anyway.


Long Live the Dying Swan!
Posts: 32
Joined: August 3rd, 2003, 5:52 pm
Location: Aberdeen UK

Flash (new member) - Tale of the Dying Swan & Other Stor



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