HALLELUJAH!!! READ THIS!

Information about how to manage or reduce the severity of BFS symptoms

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HALLELUJAH!!! READ THIS!

Postby javens on May 17th, 2003, 3:24 am

Hi,
You guys may remember me. I used to hang out here a lot. I have many of the classic BFS symptoms. I have twitches, pain, aches, exercise intolerance, fatigue, percieved weakness, percieved atrophy, joint popping etc...the list goes on and on.
Well, I've been trying to stay away from any health websites.
I had to come back and tell you all about my one year neuro follow up.
I decided to go to Southwestern Medical center which is one of the best research hospitals in the country. They have an amazing nerology program. The Dr. I saw was Dr. Nations. She is a well known ALS and muscle disorder specialist. She's written many papers on it and is part of lots of clinical trials etc... She is also very interested in BFS.
I highly recommend Southwestern....everyone was sooo nice!
When I arrived they checked my vitals and put me in my room to wait for the Dr.
First an associate professor of neurology came in to do a complete neuro examination. She was very thorough. She said that everything was normal...reflexes, strength etc... She said that it was BFS.
She left and then Dr. Nations came in. She repeated the entire examination(they always have mutiple neuros check out each patient).
She said that I was perfectly normal. She said that the odds are, if you come in complaining about twitches..you have bfs. She works with many, many ALS patients...none came in because of twitches.
I asked her about the pain and other sx's. She mentioned the Mayo study and said that it's common for people with bfs to have other sx's.
She likened BFS to a rash...when your skin is irritated you get a rash. Bfs is a rash on your nervous system. She's working on some different theories as to why people get it. She did a blood test to check for an anibody attached to the potassium-channel. She said that a large number of people with bfs test positive for this. She said bfs does not turn into ALS...not ever! She said that I was in the clear. One year with this stuff and it would have showed up on the exam.
Later that afternoon I had an EMG and NCV. It was done by another professor. Dr. Nations said that they were doing it so that I could have peace of mind. So I would trust that they checked all that they could.
It was rather uncomfortable(worse than my last one...she stuck the needles further into the muscle). They checked a few places on my arms, legs and hands...even the place where I twitch the most(inside of thigh).
My EMG was perfectly normal. She said that a clean EMG ...especially at 1 year means no ALS! Hallelujah!
Well....I've been so relaxed ever since. I hope that this helps you guys.
I've had the worst of the sx's and all of the tests....no ALS!
-Javens
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GOOD FOR YOU

Postby KERRI on May 17th, 2003, 4:23 am

That is great news, thanks for letting us know that.

Kerri :D
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Postby Jenn311 on May 17th, 2003, 7:52 am

That's a great compilation of info Javens...thanks for letting us know.
You know now that you mention the rash thing...before my last round of BFS here I had some bizzare skin rash. My doctor contributed it to an allergy to the antibiotic I was on. I wonder....has anyone else has a similar experience?
Anyway...
Keep up the good health!
~jen
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RED RASH

Postby KERRI on May 17th, 2003, 10:25 am

[quote="Jenn311"]That's a great compilation of info Javens...thanks for letting us know.
You know now that you mention the rash thing...before my last round of BFS here I had some bizzare skin rash. My doctor contributed it to an allergy to the antibiotic I was on. I wonder....has anyone else has a similar experience?
Anyway...
Keep up the good health!
~jen[/quote

I have a strange red rash, it comes our usually I get a headache and hot, then the rash comes out, any time I am hot the red rash appears.

Kerri]
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Postby dogdogman on May 21st, 2003, 6:24 pm

Strange that you should mention the rash. Come to think of it I tried Prozac some 9 years ago (when all this BFS stuff kicked in) and I came out in a red rash all over my body. This could have been BEFORE all the twitching started - I'm not too sure. Hmm, maybe the rash preceeded the BFS. Anyway I have now been marked as being allergic/hypersensitive to Prozac. Who knows?

Regards,

Dogdogman.
Some days are just complete hell. Surely there are some meds that can help me!
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Postby Rich Longer on June 2nd, 2003, 6:55 pm

My neurologist said the same - their ALS patients almost never come in complaining of fasics. they usually have them but they are often very fine and are something the doctor notices not a presenting symptom

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Postby ro dash on June 2nd, 2003, 7:09 pm

:oops: It's so weird. I occasionally get a rash on my legs, if they are pressing againgst something or if I am sitting indian style and my son sits on my legs. It looks like a big hives and my skin gets so hot. The other day, I was with my friend and my leg was hitting a mat. I got up and my leg was all blotchy and burning hot. I wonder what it is? She said, " you have the weirdest stuff happen to you. " " You should plug all your symptoms in and see what your get." I do have such strange symptoms. I feel one day I will find the answer. But for now, I will just hope all it is is BFS.
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Postby Jenn311 on June 2nd, 2003, 8:27 pm

Hey RO...

I used to get hives like that. I looked it up one time and I think the name was compression hives or something like that. I used to get them if I went for a jog....it was so itchy and painful, and just like you said....hot and blotchy. I stopped jogging. So I have no idea if I would still get them or not now. But I don't get them when I wear tight jeans anymore...so maybe I wouldn't. Maybe our systems are just more sensative than others. Maybe there is a connection to this BFS?...
~jen
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Postby Brian_B on June 2nd, 2003, 10:37 pm

a while after my symptoms started, and I had been to a neurologist that said it was BFS, I was talking to online to a friend thats a neurologist. I was asking him some questions and coincidentally he said he had BFS.

it was funny in a way for neurologist to have BFS but still be worried about ALS. But he told me the same thing after a year or even less than a year weakness would show up He also said he never had a patient that came in with ALS that just was twitching, they ALL had weakness first.

he also has the various other symptoms, cramps, spasms, weird feelings ect.

my neurologist is from a small town in IL here but my friend was at U of Washington hospital in Seattle so he wouldve seen a lot more cases than my doctor did and it was reassuring to hear him say it wasnt anything serious.

at the moment my left arm has been aching all day without any twitching though, and being around a nurse(my mom) and always worrying about health I started to think that maybe I had heart trouble lol but mom listening to heart and blood pressure, plus the fact arm pain from your heart is usually an extension of chest pain and since I have none of that Im sure its nothing than a pulled muscle or muscle ache lol


last day I worked this week(sat night) I know when I was getting my uniform back on after bathroom that I pulled my left arm kinda reaching around to pull my mace and radio holder to the front of my belt, so I imagine that its just now pretty much starting to hurt.
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Postby Arron on June 10th, 2003, 9:43 pm

Javens, that was great news! I am glad your neuro visit went better than expected.

So far, after all of the research and forum hopping I have done, I have not found one single person (in over 2 years of research) that has had BFS turn into anything other than BFS. Not one person crippled, hospitalized or anything.

I like what your neuro said about the " like a nervous system rash" analogy. That makes much more sense than some of the other theories I have heard in the past.

By the way folks, it was an "analogy" of a rash that Javen's doctor used to describe BFS, not actually a rash itself, so all of you that have rashes... you have rashes, like 90% of the rest of the population gets from time to time... again totally normal and UN related to BFS.

I get tooth aches from time to time like a lot of people, head aches, alergies and so on, just like most of the population gets from time to time, but it certainly doesn't mean that it is related to BFS in any way. The reason some of you have rashes is because rashes on the skin are very common, so of course some of you will have a rash from time to time, but the skin has nothing to do with the central nervous system or muscles twitrches.The doctor was just putting it in simpler terms to explain it better, not actually saying it IS a rash you get, especially on your skin.

Keep the great posts coming folks. ALL of the collective information will someday unlock the key to the mysterious closed door to BFS.
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Postby Jenn311 on June 10th, 2003, 10:46 pm

Here I have to disagree with you Aaron....a lot of the systems in our bodies are inter-related. For example, if someone suffers from a digestive system disorder, let's say malabsorbtion for some reason, their bones will be brittle from lack of calcium, their skin dry and flaky, their nerves out of whack, their sperm count low, etc. Hence any diagnosis that is "systemic". A rash can be indicative of many other things that have gone awry in a body....for example, lupus, leukemia, pregnancy (though that one is not really a disorder...), herpes, allergies, etc. I think it would be reasonable to assume that it is possible for a "rash" per se of the nervous system, or in other terms a general inflammation of the nerve pathways, to cause all the twitching and tingling. It could very likely be set off by a reaction of the mylin to foreign objects in the body: toxins, viruses, bacteria... The same way that our skin reacts to the presence of a foreign substance, either through direct contact (hence contact dermatitis), or systemically through an allergic reaction to something that has entered the body....thus giving you hives.

I think if we are to find answers to the cause of this disorder, then I think we need to think creatively. Who knows! BFS may just turn up as an allergic reaction to stress and adrenalin (though that sounds a little far fetched!...but who knows. The scientific world has laughed in the face of many a man with zany ideas who in the end, turned the whole way we think around!!!! Galileo, Lister and Leuvenheuk for example.
I hope I didn't make you mad by disagreeing,...just wanted to point that out.
Cheers! `jen
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