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Having a bit of a meltdown

PostPosted: October 3rd, 2014, 9:18 am
by bobajojo
Sorry folks. After 3+ years of this crap you'd think I was used to it. Nope. This is my nightmare going on these days... in addition to seeing several fasics all over my tongue.

https://www.youtube.com/watch?v=tO2_3bt ... e=youtu.be

Re: Having a bit of a meltdown

PostPosted: October 3rd, 2014, 9:37 am
by TwitchyDoc
Mine worsened too, quite signifficantly. It is not 20 per hour as it used to be, now I would say at least 10 per minute? In places just like yours but mine are faster, machine-gun series, affecting typically arms, shoulders, chest, abdomen and also lower back. Knees and thighs heavily affected some days, hands too.

Re: Having a bit of a meltdown

PostPosted: October 3rd, 2014, 9:46 am
by bobajojo
I just sent the video to my neurologist. He wants me to do another EMG but mainly for my mental state. He said that because my mom twitches, my family could be a key to finding a genetic link to neural hyperexciteability and Mass General is going to enlist the help of a geneticist to get us tested. He is really excited about it. I'm not so excited right now. Twitching is off the charts, multi fibers all over going crazy. Never in my 3 years of BFS have I had it this bad.

-Matt

Re: Having a bit of a meltdown

PostPosted: October 3rd, 2014, 9:54 am
by emmie.s
I am so sorry that you're going through this Matt. I'm sure you've already tried anticonvulsants, or maybe botox on that muscle group in particular? (not sure what other treatments are for PNH case like yours).
Please keep us updated I'm sending positive thoughts and prayers your way. I'm know in my heart its all benign, but I know nonetheless you must be full of anxiety and just exhausted from twitching so long.

Re: Having a bit of a meltdown

PostPosted: October 3rd, 2014, 9:56 am
by Yuliasir
hope it is due to change of seasons...

hugs
Yulia

Re: Having a bit of a meltdown

PostPosted: October 3rd, 2014, 10:10 am
by bobajojo
He wants to do my tongue too. When I get the results back, I have to leave this all behind me. I know its easier said than done.

Re: Having a bit of a meltdown

PostPosted: October 3rd, 2014, 11:34 am
by bobajojo
Emg is nov. 14. Still waiting on the geneticist. I swore after three years I'd never do another emg. Can't believe I'm doing this

Re: Having a bit of a meltdown

PostPosted: October 3rd, 2014, 1:31 pm
by TwitchyDoc
I told you that year or two ago that you have the hereditary form which is mentioned in one of the Eisen's books. Must be pretty rare but you know - it only proves it is not MND. I hope to have the samé considering my grandfather fasciculations.

Re: Having a bit of a meltdown

PostPosted: October 3rd, 2014, 4:59 pm
by leaflea
Hi Matt, -- a couple things

1. I just read your post after your Mayo visit a while ago. Did you ever get tested for Isaac's? he mentioned something about a blood transfusion? may be worth an explore. Didn't the mayo neuro say it is only worthwhile if the twitching is debilitating and extremely bothersome? Perhaps the time has come

2. Neuros do get really excited about this stuff. I went with my mom to a neuro appointment because she has been getting horrific cramps. She's always had them to some extent, she is now 74. I mentioned my bfs and he got all excited "you see! There is something hereditary about all this!" He is a third generation neuro who owns about 7 big clinics in the MPLS area. Some are really interested even if they don't really know squat. My mom doesn't twitch and didn't cramp like I do when she was my age. Her mom was a bit the same as her.

Wish you a good weekend!

Re: Having a bit of a meltdown

PostPosted: October 4th, 2014, 12:25 am
by J4son
Mat,

I already told you that your post about the mayo visit was one of the most reassuring posts I’ve read on this site. I’m sorry to hear that you are passing through tough moments actually, and hope you’ll feel better soon. I think it is interesting to do the genetic test and see if in your case some genetic reasons could be involved in the onset of your symptoms. I also suggest that when you will get the results of all your new tests, you take a short break from the board. It might be a necessary step to put all this behind.

Re: Having a bit of a meltdown

PostPosted: October 12th, 2014, 3:28 am
by edado69
bobajojo wrote:Emg is nov. 14. Still waiting on the geneticist. I swore after three years I'd never do another emg. Can't believe I'm doing this

If it helps, great. I had several episodes of severe exacerbation. Once I had cramps to my upper limbs to. The episode was "scary". It did not repeat itself.
I am here once again, looking around, after a couple of bad nights. I twitch 24/7 everywhere, but when there is "strong" hot spot, then...Night alarm on!
I said before, my brothers have random twitches, particularly one of them, and my wife does twitch to...So, a genetic link is hard to prove as twitching is more common that generally reported. We are just at the very top of the scale, probably...I promise you. I twitch quite bad now...Almost, 8 years on....I tried to reduce exercise...Nothing...Change diet...nothing....But, family is ok, work is ok...You will be ok. I am sure. Keep strong.

Re: Having a bit of a meltdown

PostPosted: October 15th, 2014, 10:51 am
by elliottok
Matt,

Sorry you're having a flare up. But why go down this road again? You've been seen by the best doctors in the country. You ran a marathon not too long ago. You have no weakness whatsoever. You are A-Okay. I know how annoying and bothersome this stuff is, but there is no point to having EMG after EMG - year after year. Honestly, I would cancel the EMG if I were you. It's a crutch you keep coming back to for reassurance. But, I'm not you and to each their own. As for me, I'm done with neuros and EMGs unless there is a drastic change.

Re: Having a bit of a meltdown

PostPosted: October 19th, 2014, 12:36 pm
by Pete Borota
Hi buddy,

Long time no speak, have you looked into diet, do you have any Lyme clinics in the area that you could go to.

Re: Having a bit of a meltdown

PostPosted: October 19th, 2014, 6:02 pm
by Little Lost
Hi Matt,

I am back here also.....it doesn't ever stop for me either.

Re: Having a bit of a meltdown

PostPosted: November 17th, 2014, 2:05 pm
by bobajojo
Just an update. I was officially diagnosed with PNH today. This is stemming from a specialized test that they administered as part of my NCS/EMG on Friday to which I tested positive.

I'll elaborate more later but just wanted to update.

-Matt