Listing of BFS knowledgable neuros

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Listing of BFS knowledgable neuros

Postby MStew on April 30th, 2013, 2:16 pm

I think it would be tremendously valuable for BFS sufferers to be able to see a neurologist who has a good level of knowledge on BFS. If you have had a good experience with a neuro, can you post the doc's name and city? I'm in the upstate NY area; would love to be able to see someone around here.
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Re: Listing of BFS knowledgable neuros

Postby SecretAgentMan on April 30th, 2013, 3:06 pm

BFS is a category that doctors place you into when you exhibit these neurological symptoms after they rule out other diseases such as MS and such. Essentially it is an exclusionary diagnosis. Conventional medicine has no answers to offer anyone and can only offer pharmaceuticals to mask the symptoms. I don't know if you can qualify someone who doesn't know what you have as an expert in it.

I can recommend my alternative medicine doctors (a husband and wife practice) who practice Chinese holistic medicine (acupuncture/acupressure and chiropractic). They have helped me immensely because they acknowledge and work with aspects of our health that conventional medicine completely ignores. Acupuncture works with the subtle energy systems of the body, which is incredibly influenced by emotional traumas, thought patterns, and even belief systems. They work with natural supplements which address actual deficiencies or toxicities that we may have developed because of our diets and lifestyles. They work with your structural alignment to ensure that sources of inflammation and energy blockages are removed/cleared. The problem of BFS is multi-faceted and requires a multi-faceted solution. The problem most people here experience is that the doctors they go to for answers are ill-equipped to fill that need. It isn't their fault; they just aren't trained or taught what they need in medical school. To be honest, they are trained from day one to push pharmaceuticals and that won't cure a single case of BFS, ever...

If anyone is located near Dayton, OH or is willing to travel to Dayton, OH on a regular basis I'd be more than happy to supply their information. If you're not near I recommend you look for someone who practices medicine that will actually address the ROOT CAUSE of what is causing you problems. I can guarantee you that you are not deficcient in pharmaceuticals though.
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: Listing of BFS knowledgable neuros

Postby ag2002 on April 30th, 2013, 8:56 pm

I totally agree with SAM. The only thing mainstream physicians can do is cover up symptoms w/ meds. Which in some cases might be helpful temporarily until you can pursue more holistic medicine that deals with the root problems of the disease (if you want to call it that). The problem with BFS is that every case is unique and usually no mainstream physician will be able to cure the problem. The only exception I see is maybe if you had some kind of deficiency that showed up on a lab test (B12, calcium, magnesium, etc.) But, that is rarely the cause. I wish it was that easy. You should see a neuro to rule out the bad stuff, but don't think that mainstream medicine will cure you. Hope this helps.
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Re: Listing of BFS knowledgable neuros

Postby BFSBurger on May 3rd, 2013, 4:23 pm

I would suggest searching:

Neuromyotonia Doctor (city name)
or Peripheral Nerve Hyperexcitability Doctor (city name)

Or NMT Doctor / PNH Doctor

Aside from these, I doubt any doctors have a clue about PNH related potassium channel disorders
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Listing of BFS knowledgable neuros

Postby MStew on May 14th, 2013, 10:56 am

Thank you both. I'm not necessarily looking for a cure (although that would be nice :) -- more to talk to someone that has a familiarity with BFS and its multitude of symptoms. I have found this site to be more accurate/more helpful/more reassuring than the two neurologists I've seen to date. And when you're in the throes of BFS anxiety and hanging on (reading into) every word from the neuro, it's not helpful if they don't have the right info.

So my question is about finding doctors that have had experience with/good knowledge of BFS...
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Re: Listing of BFS knowledgable neuros

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