My trip to the Mayo Clinic- VERY REASSURING!

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

Postby jerry2 on March 6th, 2012, 1:24 pm

bobajojo wrote:Nickston,
Not only did I mention it, my foot cramped up bigtime during the EMG! They were needling my calf and told me to point my toes to provide resistance. As soon as I did that, the arch of my foot cramped up into a ball. I told the neuro and he could see it, but wasn't impressed. Still got the all clear. -Matt


Yes that is happening to me all the time :-( If I point my toes away from the ankle I get immediate cramp in the arch of the foot. This is the trigger for my cramp. Is cramp considered a cramp when it is spontanious or is it cramping also if you can move fingers in a way that triggers it? because I read quite a lot of people get cramps when they put the foot awaay from the ankle and at the same time bend the toes down. I don't know if that happened to me before but now it is worse, because if I sleep on the stomach my foot is extended and my toes are looking down and I can easily cramp if I am not carefull ;-( So this is not from always. This foot arches cramps are the only cramps I have most of the time.
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby wjjw on March 6th, 2012, 6:54 pm

Jujulia wrote:Those numbers are scary. It seems like we, twitchers, have way more chances to develop myasthenia gravis or a thymoma than the average population.

Most neurologists don't seem concerned with this. And there are at least 2700 posting members on this site, if this were that common, at least a few that had this problem linked to their twitching surely would have posted back a warning advising people to get checked out, wouldn't they? The doctors at the Mayo Clinic told Matt that they see "a lot" of people with this, and they didn't even mention this. So based on that relatively small study, I don't know how to interpret this, but personally I have no concerns about it.

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

Postby PetrifiedGuy33 on March 6th, 2012, 7:02 pm

its a very small percentage of BFSers according to that paper and even if the finding is credible at all, most thymomas are benign themselves so you would have to be extremely unlucky to a) have a thymoma b) have a malignant thymoma

oh and thymomas can be treated

if i had to choose between you know what and a thymoma, it's a thymoma every time

oh well - i guess it's one more very unlikely thing for us twitchers to fret over (causing us to have more twitches)
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby Jujulia on March 7th, 2012, 1:54 pm

I appreciate your replies guys; thanks God there is a few people on this board with an optimistic nature. :D

However, let's be real, we don't know for sure what happened to all the older posters on this board. Some came back to tell us they were doing fine, while others have completely disappeared (which of course doesn't necessarily mean anything)...

But as you say Bill, the fact that they didn't say anything about it to Matt at the Mayo clinic IS quite reassuring. (By the way Matt, did they check for VGKC and AChR antibodies?)

Still, as you say PetrifiedGuy33, this study isn't pretty reassuring. Two of the patients developed a MND while some of the others (actually quite a lot) got myasthenia gravis. Of course, if we had to choose the lesser of two evils......

I truly believe twitching can be benign (they are a lot of examples here on this board to prove it), but it can also be the symptom of something more sinister and unfortunately, not all the doctors are professional and ethical enough to take this problem seriously...
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby twitcherHH on March 7th, 2012, 2:12 pm

Jujulia wrote:Two of the patients developed a MND while some of the others (actually quite a lot) got myasthenia gravis. Of course, if we had to choose the lesser of two evils......


This is just not true. Some (actually a lot) of myasthenia gravis patients were included in the study. They did develop PNH, not the other way around. The authors state that because these myasthenia patients developed PNH, it is possible that other autoimmune-related diseases may also cause PNH.
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby Jujulia on March 7th, 2012, 2:14 pm

This is just not true. Some (actually a lot) of myasthenia gravis patients were included in the study. They did develop PNH, not the other way around.


Sorry, I didn't formulated it well. However it doesn't change the fact that twitching can be associated with this disease and not everybody here gets tested for it...
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby twitcherHH on March 7th, 2012, 2:16 pm

Jujulia wrote:
This is just not true. Some (actually a lot) of myasthenia gravis patients were included in the study. They did develop PNH, not the other way around.


Sorry, I didn't formulated it well.


... but that's a huge difference if you want to use the study to predict what happens to patients that only present with PNH (as most of us here).
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby Jujulia on March 7th, 2012, 2:54 pm

Anyway, I just read that myasthenia gravis was not necessarily easily detectable... so forget what I said about the testing.
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby Aoi on March 7th, 2012, 11:32 pm

Just to add one data point to the question of any association between BFS and MG, I was tested for MG using the Anti-Ach and the MuSK antibody tests, but not the Tensilon test. The reason for the test was my droopy eyelids, not so much the fasciculations, which have too broad a DDx to on their own warrant MG testing, said my docs. My test results were negative for MG every time.

However, I do not have an official diagnosis of BFS. My chart reads "pain and parasthesias of extremities" and "gait abnormality." My primary care physician says my situation seems to be more complex than just BFS. I'll be seeing another specialist soon enough, since my gait abnormality is worsening.
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby bobajojo on March 8th, 2012, 9:05 am

Aoi,
Interesting. How did your symptoms start? How long ago?

Also, I just wanted to comment on the point jujulia made about us not knowing the status of old-timers. I fully believe that if there were any kind of trend of old timers who thought they had BFS being later diagnosed with a more serious condition, we would absolutely hear about it. The reason is that things (symptoms) would start to change for them prior to a different diagnosis. So it would be highly likely that they would come back onto this BFS board as their condition changed but prior to another diagnosis. This just isn't happening. I'm not saying EVERYONE would come back here, but if there were any kind of pattern on this board for BFS to turn into anything other than a benign condition, SOME of those members would come back and let us know through their posts, but that just isn't happening. Just my belief. It is perfectly reasonable to assume that if an old timer has not been on this board in a long time, that they just aren't concerned about BFS anymore. -Matt
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby Aoi on March 8th, 2012, 11:08 am

bobajojo wrote:Aoi,
Interesting. How did your symptoms start? How long ago?
...snip.... I fully believe that if there were any kind of trend of old timers who thought they had BFS being later diagnosed with a more serious condition, we would absolutely hear about it. ...snip... -Matt


This is a common problem with long-term prospective studies in epidemiology. People are lost for one reason or another. But the lack of progression to a more serious disorder among most people with BFS here should be a cause for celebration. Of course, the Devil's advocate would point out that the lack of people diagnosed with something else not showing up here to report it is due to their rapid demise. Not a happy thought, I know, but necessary for completeness. Note that I've not seen a proper research study with such an outcome.

My first symptoms appeared almost 12 years ago. They appeared without any illness or injury. In the past year or so I've had worsening signs and symptoms, including weakness in my legs such that I now use a cane on many days, and enough problems with my arms that I often use voice-input software instead of typing. I'm also on several meds to control/reduce the pain, parasthesias, and fasciculations. I suspect I'm not a typical case of BFS, and hope that anyone who reads my posts is aware that whatever is going on with me probably won't happen to them.
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby wjjw on March 8th, 2012, 11:45 am

I agree that we don't know what happens to many people. But I do agree with Matt, and that was my point in mentioning the number of posting members--if the percentage of something like cancer was as high as in that small study, "chances are" we probably would have heard something. But more important, keep in mind the Mayo clinic study where the number of people followed long term was greater, with 121 people. Zero developed MND and only 1 person developed lung cancer, and I don't think that's terribly different from prevalence in the general population.
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby Jujulia on March 8th, 2012, 11:50 am

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

Postby Aoi on March 8th, 2012, 12:04 pm

wjjw wrote:I agree that we don't know what happens to many people. But I do agree with Matt, and that was my point in mentioning the number of posting members--if the percentage of something like cancer was as high as in that small study, "chances are" we probably would have heard something. But more important, keep in mind the Mayo clinic study where the number of people followed long term was greater, with 121 people. Zero developed MND and only 1 person developed lung cancer, and I don't think that's terribly different from prevalence in the general population.


Your point is well-taken, and I agree with it. I've read the Mayo Clinic study and its outcome seems well-founded. I also think someone here, or elsewhere on the Web, would have mentioned BFS developing into something else. Or it would have been mentioned in one of the many books or articles on neuropathy, neurology, etc. I've read. 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.
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby Aoi on March 8th, 2012, 12:09 pm

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

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