My trip to the Mayo Clinic- VERY REASSURING!

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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby bobajojo on March 8th, 2012, 12:41 pm

Aoi,
I think that's a fantastic idea. -Matt
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby wjjw on March 8th, 2012, 1:06 pm

Aoi wrote:Perhaps AboutBFS.com can set up its own prospective trial: i.e. see what happens to members that have joined recently as time progresses, then put those results, with pretty graphs, in the FAQ section so that we can all see it and be reminded of the "B" in BFS.

And send an email survey to the the first 500 members (or more) who joined, and explain why it was being done. That could yield 8 - 10 years of data up front. I'm a software engineer, and if the site admins wanted to pursue this, I could volunteer to automate the process.
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby bobajojo on March 8th, 2012, 1:09 pm

I will PM the mods now to see if they have any interest in doing this. -Matt
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby MarioMangler on March 8th, 2012, 4:29 pm

The first thing I did when I joined this board was contact as many original members as I could (not all of them have contact info). I did manage to reach a good number of them. And what was their most common response? "Yeah eventually I just got bored with BFS and moved on with my life."
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby bobajojo on March 8th, 2012, 4:31 pm

Mario,
Thanks for that post. That's exactly what I thought! -Matt
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby MarioMangler on March 8th, 2012, 5:08 pm

A lot of them wound up just obsessing over other stuff instead. There were a few people who were now on the anti candida yeast kick. There were a few who were convinced they were going through benzo withdrawal. There were a bunch who didn't even remember being a member of the BFS board in the first place. At no point did I ever run into anyone who said it had progressed into anything.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby wjjw on March 8th, 2012, 6:01 pm

MarioMangler wrote:The first thing I did when I joined this board was contact as many original members as I could (not all of them have contact info). I did manage to reach a good number of them. And what was their most common response? "Yeah eventually I just got bored with BFS and moved on with my life."

I hope "a good number" is something like 100 :) then I won't have to do what I volunteered for :wink:

I personally contacted some of my friends who were absent from the board, and they were all fine. I suspect others did the same, and maybe even some reached out to original members as you have. That's why I'd guess that if something were amiss, we would have heard, one way or another. But still, the scientific approach would be an objective survey as suggested, and if the mods are in favor, I'll gladly donate the time.
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby raindog on March 8th, 2012, 8:25 pm

To be fair the paper posted in that analysis 95% of this forum would not have made the criteria to be part of the sample (i.e these were people who had aquired Neuromyotonia, MG CFS PNE LEMS Morvans Syndrome etc . Also all them that got the Lung Cancer were smokers. IMO it was the smoking that caused the cancer, and the cancer started an autoimmune responce. If you have BFS and smoke and you end up with Lung Cancer it wont be because of the BFS it will imo, be entirely because your a smoker.
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby Jujulia on March 9th, 2012, 11:15 am

Aoi wrote:
Jujulia wrote:I'm really sorry to hear about all your problems, Aoi. I just read your older posts and don't understand why your doctors can't find what the heck is going on. I know all your tests were ok (EMG, MRI and so on) but still, if you say your legs are weak I suppose it's not in your imagination. :shock:


Well, not everything has been entirely "normal." And diseases of the peripheral nerves tend to be obscure, difficult to diagnose, and cause many neurologists to just declare it "idiopathic" and move on to another patient. Properly diagnosing a peripheral polyneuropathy (which just means more than one nerve in the peripheral nervous system is involved) requires a specialist within neurology, plus a lot of tests and visits to rule out all the more likely, common causes. That's what I'm going through. And they've told me that in about one-third of cases, no underlying cause can be found, so the diagnosis is something vague, and depends as much on the medical coding system the doctors use as on what textbooks might call it. Hence my current diagnoses of "pain and parasthesias of the extremities" and "gait abnormality."


At least I hope your condition stays that way and doesn't get any worse. How long have you been having those problems? also, have you noticed a slow/rapid progression?
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby Aoi on March 9th, 2012, 12:34 pm

Jujulia wrote:
Aoi wrote:
Jujulia wrote:I'm really sorry to hear about all your problems, Aoi. I just read your older posts and don't understand why your doctors can't find what the heck is going on. I know all your tests were ok (EMG, MRI and so on) but still, if you say your legs are weak I suppose it's not in your imagination. :shock:


Well, not everything has been entirely "normal." And diseases of the peripheral nerves tend to be obscure, difficult to diagnose, and cause many neurologists to just declare it "idiopathic" and move on to another patient. Properly diagnosing a peripheral polyneuropathy (which just means more than one nerve in the peripheral nervous system is involved) requires a specialist within neurology, plus a lot of tests and visits to rule out all the more likely, common causes. That's what I'm going through. And they've told me that in about one-third of cases, no underlying cause can be found, so the diagnosis is something vague, and depends as much on the medical coding system the doctors use as on what textbooks might call it. Hence my current diagnoses of "pain and parasthesias of the extremities" and "gait abnormality."


At least I hope your condition stays that way and doesn't get any worse. How long have you been having those problems? also, have you noticed a slow/rapid progression?


Thanks. First symptoms appeared almost 12 years ago. More involved symptoms, including my "gait abnormality" started in Feb. of last year, though I had leg troubles from the beginning. There is progression (i.e.: I'm worse), and the rate of progression is increasing.
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby ucdguy88 on March 15th, 2012, 2:45 am

Thank you Matt! this is a great resource for everyone to take a look and reassure themselves. Please stay around for a long long time :D
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby Barbie800 on April 1st, 2012, 7:32 pm

Fabulous post. Everyone who is scared should read this.
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby KatieMG on April 2nd, 2012, 10:58 am

Thanks for sharing this!
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby Arron on April 11th, 2012, 12:10 pm

Most of the old time BFS'ers have simply moved-on. We've been in contact with a few over the years, and a few have been in contact with us over the years to say hi, to let us know how they are doing, etc. It isn't real often but we DO get an e-mail from time to time from some over the past 10 - 15 years. I can say with all honesty that not a single ONE of ANYONE I, nor anyone I know, that has been in contact with ANY of them have gone-on to develop anything at all from their BFS. I have been around for 15 years and still have it, although VERY mild these days, but I still get occasional hot spots, tremors, shakes, weak "feelings" and rubbery legs, drained energy, etc., etc. The biggest thing to remember is that the ENTIRE neuro medical community stands behind what we have been saying all along, and they say the same thing, that BFS is in NO WAY, shape, or form, associated with ANY neuro muscular disease, and it does NOT "turn into" ANY type of neuro muscular disease. if that isn't enough for you folks, then NOTHING will EVER convince you. I mean really, have ANY of you EVER heard someone tell us that their neuro said BFS turns into ALS, or that it is a pre-curser to ALS? HELL NO!

Garym and myself get countless PM's from people over the years telling us info about their neuros. We TALK to neuros, and funnier yet, neuros contact US for info sometimes, especially in the beginning days of this site and when we had the old site, which is way beyond most of your days on here, but WE were there, and we are STILL here, alive, doing well, and with no ailments associalted with BFS other than the occasional and typical BFS symptoms.

The ONLY "cure" to BFS is to stop worrying about it and fearing it! When you are worried, or are in fear, your body releases chemicals that BFS feeds on. We have known this going-on 2 decades now. Some of you have had this stuff for quite a long time and yet you are STILL on here doubting, worrying, and now wanting to contact old time BFS'ers to again re-assure you that BFS is just BFS. If you aren't worried then there is no reason to contact old posters. It wouldn't even BE an issue. I mean, "I" don't try to contact old time BFS'ers. Garym doesn't. John V doesn't. WE are all still here, we still hear from old time members on occasions and not a single one, nor a single viable neuro clinic or neurologist has ever said that BFS turns into ANY sort of NMD's or is a pre-curser sign of a NMD.

As far as contacting old members; it's a public site. I am not going to tell anyone to not do it, nor am I going to support doing it. I am staying neutral. I am willing to bet that most of the contact e-mail adresses are out of service anyway. Internet technology 10 - 15 years ago was WAY different than what we have today, and the usual ISP's back then (AOL, WebTV, etc.) are all but long gone these days to much better an faster systems. People change e-mail addresses faster than they change underwear sometimes, especially these days. Cell phone numbers, work places and phone numbers, home phone numbers, etc, all get changed, but I am not saying you can't try. I just feel it is redundant to bother with it when we already have quite a few old timers on here, and more importantly... the entire neurological & medical community standing behind what we have been saying all along. What more do you need? It's REALLY time to move-on and quit DWELLING over this stuff. I mean, really. Some of you have had NUMEROUS EMG's over a span of time that NO ALS patient could survive and yet I STILL see them on here and I STILL get PM's from them "worrying". That isn't BFS, that is chronic worrying. People like that don't need a cure for BFS, they need a cure for habitual worrying and fear/anxiety.

There is NO editing of information on this site. There is NO omitting information that would make someone believe anything other than the information on here. We have NEVER deleted posts that have led to contrary information than what is on this site. We have NEVER changed info to lead ANYONE to think BFS is, or isn't anything than what we already KNOW it is. There isn't one SHRED of info on this entire site that points to ANY contrary information that the Mayo Clinic and other HIGHLY regarded neurological medical entities don't also say or support. It is what it is. I just don;t see the NEED to contact old posters or to do yet another poll on BFS. The info we have on here is ACCURATE and is PARALLEL to what ALL neurologists say, so I ask you again, what more do you need? It's REALLY time to move-on and quit worrying about this stuff.
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby Natalie1 on December 4th, 2012, 9:23 am

What an amazing contribution to the board Matt. I know this was done some time ago but when I read it I remember my own neurologist saying the same thing just in a different way. Tks for staying on this board and thank you for replying to my post.
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Re: My trip to the Mayo Clinic- VERY REASSURING!

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