My trip to the Mayo Clinic- VERY REASSURING!

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

Postby dogma on February 23rd, 2012, 8:20 pm

Simonaa wrote:Wow Wow Wow!!!!!!!!:) :) :)



I would love also to Majo Klinic, but I'm from Germany: (
Where is the Mayo Clinic?


Mayo Clinic is one of the more renowned Hospitals in the US, and fairly world renowned for that matter.
Go ahead and "Google" Mayo Clinic and you'll find no shortage of hits.

Their main & largest campus is in Rochester, MN. The campus bobajojo visited is in Jacksonville, FL.
The third campus is in Scottsdale, AZ near Phoenix.

My diagnosis of BFS was made at Mayo Clinic in 2000, at the Rochester, MN location.
- Dx of BFS in Y2K.
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby Wells05 on February 23rd, 2012, 9:13 pm

just had to say thank u again!! ash :D
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby Shanny63 on February 24th, 2012, 5:09 am

Thank u, thank u Matt, I knew u would get good news and you are an angel for sharing it with your fellow twitchers...everything u have said helps all of us who continue to struggle with this weird diagnosis.... :D
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby twin2 on February 24th, 2012, 9:30 pm

What an awesome post! So cool that you were able to have this experience and share it with all of us. Very helpful.
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby wanderer on February 25th, 2012, 5:51 am

This should be STICKY! HAIL MATT BOBBA! :mrgreen:
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby jerry2 on February 27th, 2012, 11:07 am

Bobajojo, nice post, thak you for sharing. You are the one of those who have similar symptoms to mine as I remember :-) You even have nigh numbness (but not night hand tremor I think)...

I have a couple of questions if I can.

1. How is the PNH diagnosed? You mentioned a blood test? Do you know what kind of blood test?
2. You can also induce eyelid twitch like I do (this is the only twitch I can self indulce). Did the doctor mention anything about that the eyelid twitching is negative sign for ALS maybe? Do ALS patients twitch in the eyelid at all or is it PNH all the way?

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

Postby bobajojo on February 27th, 2012, 1:57 pm

Jerry,
PNH can be detected through anitbodies in the blood. I had a test for antibodies that would interfere with my potassium channel blockers (I think I said that right). The eyelid thing is nothing to be concerned about. I showed it to my neuro at the Mayo clinic. He was not impressed. Here is a video that shows how I can induce the twitching.....
http://www.youtube.com/watch?v=xUMN5UYrNUc
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby mwagner on February 27th, 2012, 3:00 pm

I can induce eyelid twitching as well. I wonder if most people can?

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

Postby bobajojo on February 27th, 2012, 3:10 pm

Hey Mitra!

I've talked to a lot of BFSers who can. Its really common.
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby MarioMangler on February 27th, 2012, 5:58 pm

Even people who don't have BFS can induce eyelid twitching. Usually it just means you aren't sleeping enough. I used to get it all the time when I was in college, and that was a good decade and a half before I ever got BFS. Just sleep more and stare at the computer less and rest your eyes more and it will go away.
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 anxietyridden on February 27th, 2012, 8:41 pm

Thanks for sharing this Matt. I enjoy reading your posts, you are well-spoken. This reassurance you received must be such a relief. I have read a bit on the internet about PNH and have often wondered about that diagnosis myself. There is a group (rare disorders, or something like that) that has a PNH site on the internet. I hope everyone here gets the chance to be 100% reassured that our twitching is benign so we can enjoy life again; I know this is my dream.
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby jerry2 on February 28th, 2012, 5:48 am

bobajojo wrote:Jerry,
PNH can be detected through anitbodies in the blood. I had a test for antibodies that would interfere with my potassium channel blockers (I think I said that right). The eyelid thing is nothing to be concerned about. I showed it to my neuro at the Mayo clinic. He was not impressed. Here is a video that shows how I can induce the twitching.....
http://www.youtube.com/watch?v=xUMN5UYrNUc
-Matt


I thought that the eyelid thing can maybe point AWAY from something sinister, like if you have eyelid twitching that doesn't happen in xxx disease or something.

My doctor never pointed me out that I can in fact test for PNH. Do you know what kind of antibodies they look for? My doctor doesn't know this test. My guess is also that the antibodies test can detect PNH that is caused by something wrong in cells. If you have like my therapist says, emotional and energy problems, you can have PNH but doesn't show on any test, as the PNH is psychologiacal in this case. Are there different types of PNH? One that the cause is psychological and the other that the problem lies in pottasium channels?
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby jerry2 on February 28th, 2012, 5:50 am

I had occasional eyelid twitching before like the rest of the world. But since day one this BFS started I can always induce it and I know for 99% that it is connected to the other twitching in my body. It happened the same day as my now infamous finger twitching.

Right now I have a bad flu :( And I think I twitch more. It is middle of the day here and both my arms are a little tingly (not to the numbness state but do not feel 100%). I know, I know, this is sensory *beep*...
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby Jujulia on March 1st, 2012, 11:34 am

My doctor never pointed me out that I can in fact test for PNH


Jerry, I haven't been tested for this one either... and I saw two different neuros. How come is that? I wonder how accurate this test really is and how much people on this board have received that PNH diagnosis.

Anyway, Matt, I'm glad your EMG was - once again - clean; you must be so dammed relieved.
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Re: My trip to the Mayo Clinic- VERY REASSURING!

Postby bobajojo on March 1st, 2012, 11:42 am

Jerry, Jujulia,

There are a couple reasons why you weren't tested for it. First, its a very expensive test and not all places can test for it. My blood test had to go to the Mayo clinic in Minnesota which is why its taking so long to get it back. Secondly, twitching in the absence of weakness is not concerning. Even if my test comes back positive, they aren't going to treat me for anything. The test will just further prove what they already know to be true. This is benign. -Matt
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Re: My trip to the Mayo Clinic- VERY REASSURING!

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