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AboutBFS.com • View topic - My trip to the Mayo Clinic- VERY REASSURING!

My trip to the Mayo Clinic- VERY REASSURING!

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

Postby Jujulia on March 1st, 2012, 12:18 pm

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

Postby bobajojo on March 1st, 2012, 12:42 pm

Just got my results from Mayo... as I fully expected, my blood test was negative for PNH. Oh well. Guess its just plain ol BFS.
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby Jujulia on March 1st, 2012, 1:11 pm

Well, at least now you know! or should I say "you don't"?.... :wink:
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby mwagner on March 1st, 2012, 2:12 pm

I'm sorry Matt (I think? Were you hoping for a PNH diagnosis). But, that might be a good thing, right? It seems to me like BFS would have more of a chance of "going away" at some point, if PNH is truly an auto-immune condition.
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby jerry2 on March 1st, 2012, 2:35 pm

I understand that, but why did they test you for it if you don't have weakness? Perhaps he ordered the test because you twitch so much you can show the twitches to the doctor every second. I can not, I can show the foot twitch usually but not the others.

What about psychological PNH? My therapist says my nervous system is in some overactive state, but for psychological reasons. I guess that would not show on blood test...

BTW: Do you know what is the test's name?
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby nickston on March 2nd, 2012, 11:34 pm

Great to hear!!! Did you mention your cramping to him as well?
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby raindog on March 5th, 2012, 6:12 pm

Great post matt. Hopefully now any MND fear is out on its *beep* out the back door, so its got to have been worth your time going and every penny spent.

The VGKC antibody test is useful but its not always positive for people with Neuromyotonia / cramp fasciculation sydrome. PNH disorders etc. as only 40% of those diagnosed with these conditions are positive for that test.

Heres a good read that explains a fair bit of the diversity of these PNH spectrum disorders

http://brain.oxfordjournals.org/content/125/8/1887.full

http://pn.bmj.com/content/2/4/225.full.pdf
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby fox2run on March 6th, 2012, 7:38 am

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

Postby Jujulia on March 6th, 2012, 10:16 am

Last edited by Jujulia on March 6th, 2012, 11:07 am, edited 1 time in total.
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby bobajojo on March 6th, 2012, 10:48 am

Jujulia,
It is my understanding that BFS, BCFS, PNH all fall under the same umbrella. Some neuros say that they are labels based on intensity of symptoms... so BFS, then CFS, then PNH. A small percentage of PNH cases (I think I read 5%) are paraneoplastic, meaning they are secondary to some other disease like lung cancer. But, please keep in mind that this is just a sliver of PNH cases which are just a small number of people with our symptoms. Its not even worth worrying about. Personally, I don't know of ANYONE on this board where that was the case. - Matt
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby Jujulia on March 6th, 2012, 11:22 am

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

Postby bobajojo on March 6th, 2012, 11:46 am

It says that the participants in the study had "acquired" PNH. I'm not sure what that means but I still believe its a very small percentage of people with BFS.
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby nickston on March 6th, 2012, 12:16 pm

Matt, did you mention your cramping to the neuro at Mayo as well? I'm interested because twitches + cramping seem to be associated with more problems (possible increased incidence of neoplastics/ALS, however slight/weak the connection may be). If the Mayo neuro knew of your cramping and despite that gave you a favorable prognosis, all the better.
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby bobajojo on March 6th, 2012, 12:30 pm

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

Postby twitcherHH on March 6th, 2012, 12:55 pm

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

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