Having a bit of a meltdown

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Re: Having a bit of a meltdown

Postby Brummer on November 17th, 2014, 2:10 pm

what is pnh? something to worry about?
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Re: Having a bit of a meltdown

Postby bobajojo on November 17th, 2014, 2:11 pm

Absolutely nothing to worry about. Its just one label to benign twitching. All good, its benign. Its Peripheral Nerve Hyperexciteability.
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Re: Having a bit of a meltdown

Postby LKP1231 on November 17th, 2014, 2:31 pm

Glad that's done :)
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Re: Having a bit of a meltdown

Postby Brummer on November 17th, 2014, 2:33 pm

okay. I follow your posts all the time, because I'm twitching the same way you do. I watched your videos on youtube. I was very afraid that the doctors will find something bad. PNH is no common word in Germany. None of my doctors ever mentioned it. Is there a cure for it? What is the difference between BFS and PNH?
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Re: Having a bit of a meltdown

Postby Bibi on November 17th, 2014, 2:53 pm

So Nice to hear ! You are such A Nice guy ! I remember You send send me A video showing your twitching feet , it was so good to see exactly The same Twitch as i have , it really helped me at that time.
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Re: Having a bit of a meltdown

Postby TwitchyDoc on November 17th, 2014, 3:12 pm

Amazing news! PNH is usually a consequence of something, did they find a cause??
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Re: Having a bit of a meltdown

Postby bobajojo on November 17th, 2014, 3:25 pm

I have a follow up in early December. He mentioned that this opens up a few more med options for me, even though I am actually seeing a difference with gabapentin. But he said that some known causes (among others) are drugs, medications, and genetic causes. Given that my mom has some form of what I have, I'm thinking this is the likely cause for me. But he said we'll talk more about it at my appointment.

-Matt
Last edited by bobajojo on November 17th, 2014, 5:28 pm, edited 1 time in total.
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Re: Having a bit of a meltdown

Postby TwitchyDoc on November 17th, 2014, 3:29 pm

Great, this would be quite valuable as there is little known. I have been researching literature and found only sparse information. So the EMG has shown just fasciculations, I assume. By the way, did they do your tongue this time?
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Re: Having a bit of a meltdown

Postby bobajojo on November 17th, 2014, 3:34 pm

They tested 7 muscles this time. Left calf, left shin, left thigh, left deltoid, left thenar, my back just to the side of my spine, and my tongue through my chin (which wasn't that bad actually).

When I was leaving I asked them if they saw my fasciculations and they replied with "Oh yeah, we saw them." Then I asked "Everything OK?" and they said "Your muscles looked great. Strong and healthy."

I haven't seen the full report, I just spoke to my neuro. But I'm dying to find out if they captured the fascics in my tongue. During my follow up on Dec. 10th, we are going to discuss genetic testing to see if they can find the gene responsible for BFS (now PNH for me). My neuro is very excited about this.

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Re: Having a bit of a meltdown

Postby tschloer on November 17th, 2014, 3:35 pm

I sure hope I am posting about how annoying the twitches are 3 years from now!
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Re: Having a bit of a meltdown

Postby TwitchyDoc on November 17th, 2014, 3:42 pm

bobajojo wrote: But I'm dying to find out if they captured the fascics in my tongue.
Matt

Well, me too :) My tongue has gotten worse lately and I must admit that your news made my day (actually, rather a week :) and it helped me to feel much better. Too bad it is kindy tricky to get clear reading from tongue but it was apparently OK and that is all that matters.
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Re: Having a bit of a meltdown

Postby MarioMangler on November 17th, 2014, 3:47 pm

I always thought that BFS and PNH were the same thing. I tend to use them interchangeably whenever I tell people what I have. "I have BFS" "What's that?" "Oh it's just hyperexcitable nerves."
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: Having a bit of a meltdown

Postby TwitchyDoc on November 17th, 2014, 4:04 pm

Mario: well, good point. Technically it is not the same as "BFS" is though to be idiopathic condition while PNH has some known causes (e.g. Isaac's is severe PNH and hence certainly not BFS).
On the other hand, some researchers say BFS is a mild Isaac's..:) Does not matter in the end..
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Re: Having a bit of a meltdown

Postby Little Lost on November 17th, 2014, 6:02 pm

Matt I am so happy for you...enjoy this moment, you earned it.

Thank you also for giving me hope. I twitch constantly, in my home, in bed, walking down street, on emg etc etc....can't sit down without feeling like a bloody popcorn machine, even kids see them. Vibrations in limbs not gone for 3 years now, reaching the end of my tether, been down for first time ever in my life.......then your post....gave me such a lift. THANK YOU MATT !!!!!!!! Xxxxxxxxxx100 !!!!!!! Oh and well done for putting yourself through another EMG, must have taken a lot to get back on the couch.

Know you must want to take your result and run far from here, however if you get a chance can you explain what test you got cause I seriously don't know where to go from here.

Take care Matt, excellent news.

Hx
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Re: Having a bit of a meltdown

Postby bobajojo on November 17th, 2014, 6:50 pm

Thanks Helen.

Hang in there. It's been 3.5 years of this crap with me with lots of ups and downs (mainly downs as its been slowly progressing since day 1). I was debating whether to move forward with this EMG but decided to do it and I'm so glad I did.

The test they gave me was an extension of the NCS. When they were doing my legs, it seemed like they were getting abnormal readings. I don't know this or sure but at first it was just one neuro. She zapped my thigh a few times and I felt it in my foot. Then the back of my knee and same thing. You know the drill, a few zaps in a row and it makes your toes or foot pop. But she kept redoing the test over and over and then she left the room and asked the specialist to come in. He re-did the entire test and they were mumbling to each other. Then they did the needle EMG. But after the EMG they went back to the NCS and did my leg again. Then they asked me if I ever get cramps with this condition and I said yes, in my feet but I've had that since I was a teen. So, they said they were going to administer a special test and try to induce cramps in my foot and measure the nerve response. They put the device against my Achilles and zapped me like 20x in a row and they were very strong. Stronger than the original NCS. Apparently, that was the test that led to a diagnosis of PNH. Sorry I can't give any more but that's all I know at this point. I'll ask my neuro for more info during my follow up.

-Matt
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Re: Having a bit of a meltdown

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