BFS transmittable (please read)?

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BFS transmittable (please read)?

Postby John_JR on April 28th, 2003, 10:29 pm

I cannot say this for all, because as I have read the posts here, we all may twitch for different reasons. It’s comforting for me to know so many of you share this problem, but disturbing in that there may be a silent epidemic on the horizon. With my observations, I would like to throw this out in the open:

Theory:
It is highly possible that the majority of BFS sufferers could be due to some type of transmittable infection.

My Story:
I have had BFS symptoms for the past 15 years. I have had tests for most major motor neuron diseases, which all have come back negative.

Since around the age of puberty I’ve noticed an onset of muscle twitching. This is where a part of the muscle can be seen and felt jumping randomly. It happens what seems to be all over the body at different times. I get these twitches hourly. Most last from a few seconds to a few minutes. Occasionally I have one of these twitches for days, and this seems to be happening more often lately as I get older. Other symptom include my sensory nervous system where I can feel the same random occurrences as pain, which varies from very sharp pulsing pain to small pin pricking to itchy sensations. All the above have the same random “mores-code” pattern.

I feel as if my entire peripheral and sensory nervous system is hypersensitive. The nerves are not able to maintain a proper resting potential. I believe it is the actual neuron that “fires” probably due to some type of irritation or inflammation. When the neuron to the muscle is affected, the muscle jumps. When a sensory neuron is affected, I feel the sharp pain. Although it feels like this is randomly occurring all over my body, I believe there to be over 50 of the same neurons exhibiting this behavior, and increasing. One twitch (in my thigh) lasted 6 days without stopping. Re-positioning or stretching my neck made it subside temporarily. More evidenced the nerve fibers are irritated somehow.

I thought this problem was unique to me. Perhaps diet related, or a genetic disorder. Then the Internet was invented and I discovered many more share this evil affliction.

BFS transmittable?
However, a recent twist on the situation: My wife of 4 years now is experiencing these same symptoms! Although, not as chronic as myself she said she never had these before we met. Turns out she can remember a slow onset within a year of us being together. No matter how strange this may sound, this leads me to believe that there is some type of contagious factor associated with my BFS case. Perhaps this is not a syndrome, but rather a disease as an exposure to some type of bacteria, virus, or even prion.

Possible Contributors
Some of this might sound far-fetched, but I remind you to keep an open mind and look for links or events within your own life style.

Lyme Disease:
If any of you search through Lyme related boards and information? You will find a lot of common symptomatic traits. There is currently much debate that Lyme is sexually transmittable. The bases is on that the bacterium, which causes Lyme, is closely related to the same family of bacteria that causes syphilis. Moreover, tics are not the only known carriers of the disease. Anyone been bitten by a tic, or had contact with a known Lyme carrier?? Can you be sure? Lyme in most cases needs to be clinically diagnosed, just like BFS. There is no absolute test to confirm infection.

Canine Distemper Virus:
Here’s a quote from the fact sheet…
“It is possible for humans to contract an asymptomatic (subclinical) CDV infection. Anyone who’s been immunized against measles (a related virus) is protected against CDV as well.”
Reading this fact sheet, you see that this dog virus has a lot in common with BFS sufferers. Only difference in that CDV is usually fatal for dogs. Anyone been around dogs? Been bitten? We all know that with the recent SARS developments that viruses can make a species to species jump. Is it possible that BFS is simply a type of CDV in humans? It’s even stated in the Mayo study of BFS, that this syndrome seems to be related to some type of post-viral infection. They also noted that many of the subjects in the study were in the medical profession in one way or another.

Floaters Anyone??
Another observation of mine. How many of you see “spots or shadows” floating around in your eyes? Those that don’t, won’t know what I’m talking about. These are usually caused by fragments of your cornea becoming trapped in the visceral fluid in your eye, which results in shadows being projected against your retina. Floaters could be another sign of deep internal infection. Most infections cannot get through the Blood-Brain Barrier. This includes the eyes. I’m not saying BFS and floaters are related or always occur together, just an indictor that floaters in some cases might be another sign of internal infection either past or present.

Research Needed
I want to remind everyone that “syndrome” is just a lose term that the medical experts use to categorize something that is unknown or not yet explainable. I want to add that we are still probably far from finding the true cause of BFS or even a cure. Who wants to fund the research for a benign syndrome? After all, we are not dying of BFS are we? (Except that one individual in the Mayo study who died of a self-inflected shotgun blast. I can only image it must have been suicide.)

Disclaimer
A topic like this attracts many types of sufferers who twitch. Some might have BFS, others might have a precursor to a more critical disorder. Be careful and always get yourself fully checked out by a doctor before adopting theories.

Thoughts / comments anyone??
I want to hear from the rest of you. Can you add anything? Did I provoke some thought? Or am I just plain crazy?

John R.
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I’m waiting to be unplugged from the Matrix.
[/i]
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Postby Carolmarie on April 29th, 2003, 10:27 am

John, Your theories sound very plausible and interesting. There are various things in my past life that have made me wonder if it caused my BFS:

I had three surgeries in 2001. One time I was under 4 1/2 hours. Could it have been the anesthesia and related drugs?

Herpes? I've had shingles, chicky pox, cold sores and an infected nerve on my face that was treated with antibiotics.

We drink well water. Could it be something in the water?

We have a hot tub. Could be it be the hot tub chemicals?

I had a severe reaction to a spider bite about 20 years ago. Is that coming back to haunt me? (I was tested for Lyme just in case.)

I'd gladly give blood or whatever if there were a study being done on BFS. I'd be the first one in line with all of you!

Until then all we can do is twitch and guess what's causing it.

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Postby kim on April 29th, 2003, 2:50 pm

John,

Very interesting! I had many theories myself. Was it a bite or scratch from my cat? Was it the mosquito chemicals sprayed on my lake a few weeks prior to my twitching? Was it caused by the remodeling of my home being done (mold)? Was it viral/herpes/flu/illness related? Just prior to my twitching, I kept telling my husband I felt like I had some weird kind of virus. I had aches and pains, and my glands were a bit swollen. It almost felt like the "mumps" at one point (without the swelling). But the Dr.s couldn't confirm anything. That feeling went away, but then I started having thyroid problems. Was the twitching caused by my underactive thyroid or the medicine used to correct it? Or was it due to just plain nerves? There are times when I still wonder, but I have had the best results in accepting this as anxiety/nerve related. I almost never twitch anymore! But when I do, I begin to question again. I too will stand in line to be tested, poked or prodded if it should help us find out WHY?

Kim
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Postby fastpage on April 29th, 2003, 4:19 pm

I agree there are probably several different things going on with folks here. My symptoms almost exactly mimic yours, John, from the pain to the itching, etc. except I have only had them a couple of months. I just saw another Dr. yesterday and he told me even as a GP in a town of only about 120,000 he has seen many people with these twitches and they are not all that uncommon. It makes one wonder?
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Postby fastpage on May 1st, 2003, 11:48 am

I would add that I have been bitten by ticks (at least 2 or 3) every summer of my life, although I always find them in fairly short order. Have not suggested Lyme to the Dr. but maybe it is worth checking out. You never know. I have also had one or two dogs my whole life. Your ideas are interesting. What made me wonder a little was how fast this set upon me. I went from calf twitching to most of my body, with the other sensory problems as well, in about 3 days. It was almost like an infection although I had no disease, even a cold, all Winter as far as I know.
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COULD WE INTEREST A MED STUDENT TO STUDY US?

Postby ANDRU on May 5th, 2003, 12:28 am

Thank you, John, for the thoughtful and concise theorum. Now, I wonder if we as a community may use this information/supposition to interest someone in the nascent medical community to study us. Many of those in medical school are seeking new avenues of study, so perhaps one or more might want to tackle BFS. I'm sure he or she would have many eager volunteers, both for verbal discussion and also examinations and tests. Does anyone have any ideas on how to interest a prospective student?

----Andru
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COULD WE INTEREST A MED STUDENT TO STUDY US?

Postby ANDRU on May 5th, 2003, 12:29 am

Thank you, John, for the thoughtful and concise theorum. Now, I wonder if we as a community may use this information/supposition to interest someone in the nascent medical community to study us. Many of those in medical school are seeking new avenues of study, so perhaps one or more might want to tackle BFS. I'm sure he or she would have many eager volunteers, both for verbal discussion and also examinations and tests. Does anyone have any ideas on how to interest a prospective student?

----Andru
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Postby Jenn311 on May 5th, 2003, 8:24 am

Hey Andru...

I think you have to give them money :wink:
~Jen
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Postby DanielDK on May 10th, 2003, 7:58 am

Hi everyone - and Hi John.

I have something to tell, that you might consider quite interesting regarding your theory.

My dad (49 yrs), started twitching in his calfs all of a sudden while playing bridge one evening, and in the following months the twitching spread to all over his body. This started off in January of 2002. In November/December 2002, I started getting the same symptoms/twitches as my dad. It started off as small, barely noticable twitches that would randomly occur all over my body. - Now, 6 months later, I still have the twitches, all over my body, at any given time - but I live with it.

So here we have 2 closely related family members twitching away. Considering both me and my dad's age, and the fact that we both started twitching within 10 months of eachother, this all seems rather strange. Even more strange, is that my mother (54 yrs) also started noticing some twitching in her arms + fingers, lately. Weither she's simply more aware of such twitches now, or weither or not she's actually also been affected by BFS, I dont know.

Anyway, the neurologist (He has been so for decades - said to be very experienced), said that what we might have, is a condition called "Foulie á deu". - Now, for those of you who doesn´t speak french, it means "crazyness of two", meaning a condition, where say a family member, develops the same symptoms as another family member, merely in sympathy with the affected. Strange, eh´?

However - I dont believe that! I love my father very much, but since he hasn´t in any way been handicapped by his twitches, I haven´t worried a bit about him - therefore it seems strange that I too would start sympathy-twitching with my dad....well, whatever...what do I know? Even though I´ve been to a zillion different doctors, I am not one myself :)


Well ol´ John, this was just a little story from the real life, that might contribute to your theories. (Perhaps we should call for Mulder and Scully - (this might just be a conspiracy-theory for all we twitchers know!)

Finally, I´d just like to wish the best of luck to you all! "Gesundheit und bis hundert und zwantzich" as they say in Jiddisch (I dont know WHERE that came from!).

Well, I´ll go and wish myself good luck now, since I have a few of my A-levels this week....math and what have you....:)

Best of luck to all of you!

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