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

First, its a very expensive test and not all places can test for it.


I already paid a small fortune for my MRI, EMG and blood work in a private clinic (second neuro I saw), so I wouldn't have bothered to pay a little extra for that specific test. I guess they couldn't do it, and of course, they didn't say anything about it... I know PNH not treatable; but at least it could explain our symptoms and therefore allay our deepest fears...

Next time, if there is a next time, I go to the Mayo clinic too :D
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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

raindog wrote: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


Now you sound like a nerd.... :lol:
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Re: My trip to the Mayo Clinic- VERY REASSURING!

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

Raindog, very interesting paper, thanks.

It looks like BFS/BCFS is not as benign as we might think:

Issues of practical importance arise from the strong association between PNH and immune?related diseases, such as myasthenia gravis with thymoma or lung cancer. First, our findings suggest that all patients presenting with acquired PNH should have a serum autoantibody screen that includes VGKC and AChR antibodies, plus glucose and thyroid function tests to help exclude other autoimmune diseases. Secondly, because PNH can be paraneoplastic, it is important to search for an underlying thymoma or lung cancer. Although nerve hyperexcitability presented in most of our thymoma patients after the tumour had been diagnosed, in the remainder the development of the neurological disorder might have enabled earlier identification of the neoplasm.


:?
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

Actually, it says:

Autoimmune disease and other autoantibodies were present in both groups more frequently than would be expected by chance (59 and 28%, respectively)—particularly myasthenia gravis and acetylcholine receptor (AChR) antibodies. The neurological disorder in both groups could occur as a paraneoplastic condition. Thymoma was detected in 19 and 11%, respectively, and lung cancer in 10 and 6%, respectively.


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

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.


This is a bit unclear, because

Manifestations of muscle overactivity appeared at the same time as myasthenia in six out of 11 patients and between 4 to 34 years after the onset of myasthenia in the other five patients. Most myasthenia patients in both groups had a thymoma.


The patients in this study with myasthenia were diagnosed with it at the same time or long before their PNH-symptoms began. So I'd say this proves that PNH and thymoma occur in myasthenia-patients rather than the other way around...

But overall, this is not the most reassuring paper :-).
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Re: My trip to the Mayo Clinic- VERY REASSURING!

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