Scarlet Letter - warning to those seeking help for BFS

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Scarlet Letter - warning to those seeking help for BFS

Postby John_JR on April 6th, 2005, 9:38 pm

I didn’t want to believe it was true, but here’s a lesson learned about the medical community (at least where I’m located).

Short background:
Like many of you here, I suffer from BFS symptoms and have been for the past 15+ years. I know I’m not going to die or end up in a wheel chair because of it, but the constant random twitches all over my body are my most concern because they are highly irritating. I’ve been in and out of Neurologists who give me a clean bill of health. This all changed in a new direction when I finally met some else who has the same symptoms. That person turns out to be my wife! It was subtle at first, but shortly after we started seeing each other, she started getting a twitch here, a twitch there, once in a while. Three years have gone by and her symptoms are worsening. It doesn’t take a rocket scientist to realize that I may have transmitted a “bug” to her and this bug is responsible for me and my wife’s BFS manifestations.

This year I decide to engage the medical community once again with this new vitial information for help finding some answers. Right away I was met with resistance. The Infectious disease doctors (two) told me this is not possible. Further more they weren’t even curious with the possibility of the notion, nor did they order special blood tests (VD workups), nor report this to any medical and health athority. I pressed on for answers because I could not understand with the new evidence I presented to the doctors (both me and my wife symptomatic, and the timeline, and showing them our actual twitching muscles) they still were resistive to the possibility. Instead, they have now officially labeled me mentally ill “psychiatric obsessive disorder”, and recommended me to seek psychiatric help. I had to laugh, because this means my wife is mental too.

I’m not the conspiracy type, but my heart is telling me that the general medical community is not equipped to handle diseases of rare or unknown. I would refer to them as “book doctors” because if it isn’t in the book, they can’t help you. Why did I get the “there’s nothing wrong with you” and finally the “I’m crazy” diagnosis? Simple law and economics. American doctors are not allowed by law to refuse treatment. Therefore, they use a loop hole in the law which is to simply withhold proper diagnosis, and refer you to another doctor (including psychiatrists). It's hard for me to come to grips with this notion because I always grew up thinking America has the best medical industry. Actually, I still do believe this, but is seems a few bad doctors are ruining it for the rest.

Lessons learned:
-Medical community is not equip to handle new and emerging disease (unless life threatening or of epidemic proportions)
-Doctors WILL misdiagnose you. I know many of you warship the professional opinions of accredited doctors, but I tell you from experience that they are not saints and money is ultimately the dominating factor. This includes the fear of law suits which are rampide in this country.

Where to go from here?
I’m not sure yet. I know my medical record is now “branded”, like a Scarlet Letter. I’m college educated, I am a computer programmer by profession, but I'm playing with the idea of switching careers and going back to school to become a doctor, medical scientist, or at least a research lab technician. At least I would have access to the tools I need to properly investigate this mysterious illness.
I’m also wondering what are the proper channels of reporting possible new and emerging communicable diseases are? From my experience the general medical community has been very resistive.
Lyme disease? I have blood work in a lab as I'm typing this. Results are still pending. If it comes back with a positive result, I forecast that this doctor will not honor the results due to the lab I am using is not within our provider network. Stay tuned on this.
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Postby jenn on April 7th, 2005, 7:33 am


very interesting . . .

My mom is a nurse who has nursing friends on a nuero. unit. From talking to them, it seems to them that there are more and more people complaining of twitching. That just may mean that more people are noticing the twitches not that there is an increase in incidence, but you never know! Try the CDC. Might be interesting to see what/if anything they have to say. I have always believed the virus theory myself. BTW, my husband and my mom are both twitchers too, only not to the extent that I twitch - lucky me!

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Postby amy_twitch on April 7th, 2005, 12:14 pm

Hi John,
I applaud you very much for your efforts in trying to get more research completed for BFS. It is disheartening when the medical community makes you feel like a cast-off...however, I do think there are times where they know there's nothing they can do to make our physical symptoms go away--and so at that point, they address the mental aspect. It's frustrating all the same, but I do understand their perspective. After all, this condition won't be our killer, so they don't pay it much attention. For all of our stress, aches and pains over BFS, I wish it were different--but again, I understand why it's not.

As far as where to go from here: the only thing that comes to my mind is that Mayo Clinic study. You could contact the Mayo clinic and see if anyone is still somewhat involved with that study (follow ups and such) or see if anyone would like to re-visit it. Maybe the newer medical students who need to satisfy any research requirements (???) It would be interesting to take that route--since some group of people at the Mayo clinic saw the necessity to do a BFS study. Maybe they'd revisit the study to focus more on CAUSES of BFS--now that the original study has done it's job of proving no connection between BFS and ALS.

On the downside, I'm not sure how the original BFS study came about in the first place. If it was mainly as a means to discover (or rule out) a possible root-cause of ALS, then I don't know that they would be interested in putting further effort into studying our benign condition--as their focus is on more severe conditions. Guess you never know until you try. I would think that the folks at Mayo (in light of the BFS study) would at least be responsive to your efforts--and maybe give more insight into why they would or wouldn't choose to further delve into BFS.

Thanks again for your efforts!! Keep us posted about your Lyme results.

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Postby Barb916 on April 7th, 2005, 6:11 pm

Hi John,

Great post!

I don't know if I have a scarlet letter on my chart YET, but I do get the feeling that it's coming. It's terrible to have to feel that way, always wondering if the doc is taking you seriously or just blowing you off because they think you are a nut! I've had the feeling before at a doc's offices in the past. I know what it's like. :cry:

My answer to that problem is.....get another doctor! One that you can "start fresh" with if you want to pursue the cause of the syndrome.

I like Amy's idea of inquiring at the Mayo Clinic. If you ever do pursue that idea, count me in as a case study!

Take care,
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Postby eric on April 7th, 2005, 6:41 pm

it is now proven that lyme is sexually transmitted, my son has the same bands that i do and he is now in the hands of a llmd in wife has it also from me.. so now they know that the tick is not the only vector it is the flea and mosquito.. let me know that you got this message....
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