Bulbar onset

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Re: Bulbar onset

Postby Ghayes420 on December 12th, 2014, 11:44 am

Oh don't get me wrong, I still occasionally doubt. Please don't get me wrong there. Not everything I was told by these experts was roses and chocolates.

I read all the literture available, yes. Once I realized its is trumped by actual doctors with over 30 years experience, then I stopped reading.

I don't tell anyone here that they 'don't know anything'. There are some extremely knowledgable people on this forum who too have educated themselves by going to top specialists. Many on here in fact. You aren't one of them, don't worry.

As a side note, you come off as kind of a douchbag btw, jus sayin.
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Re: Bulbar onset

Postby crotwich on December 12th, 2014, 11:57 am

Sorry for hijacking this thread, but RobJ I am just being curious... After reading (most of) your posts, I am not quite sure what are your trying to say (besides "no weakness, no ALS")?
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Re: Bulbar onset

Postby RobJ on December 12th, 2014, 12:16 pm

Ghayes420,

You know who you are.....you've been pointed out!
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Re: Bulbar onset

Postby Ghayes420 on December 12th, 2014, 12:25 pm

"You have been pointed out."

What does that mean? I have been pointed out in a crowd several times. That was flattering.

Or maybe I should just say Thank You for pointing me out?

I am not so sure of this new-age urban lingo you are applying here. But thanks.

Feel free to continue to spread knowledge learned and advancement of the BFS cause like the rest of us try and do here.

If your objective being here in this group is to "point people out" and be confrontative without offering anything worthwhile I think garym should consider your membership for deletion.
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Re: Bulbar onset

Postby misterjuanperalta on December 12th, 2014, 4:54 pm

Why must we exploit a post to argue with each other? It breeds for fewer contributors.
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Re: Bulbar onset

Postby RobJ on December 13th, 2014, 4:51 pm

I've been at this for some time, I get confused with the dates, It was my son at 1 years old that visited me in the hospital in Boston at St. Elizabeth's hospital that I recall, this puts it at 21 years in February, sometimes I get confused and say 22 years because of his age. I thought I was having a heart attack, so didn't the doctors, they arrived at myositis, interns noticed the twitching, I knew it was there, just had no idea there was a connection.

I have seen some of the best at Mass General, South Shore Hospital, Brigham's and Woman's Hospital, St. Elizabeth's Hospital. I have emailed specialists in Kennedy's disease, been offered money to be a test patient, quite a few emails back and forth. I've been in forums with several of the top Kennedy's disease neurologists in the world, elevated CPK and twitching in Kennedy's proceeds weakness by decades, some die and never knew they had a MND. They've got one case of twitching and elevated CPK in a baby.

I'm not trying to freak anyone out. The fact is, no matter if what you have is silent, if you have no weakness, even in Kennedy's disease there is a genetic marker, no neurologist is going to label you with a MND and you are wasting your time going to a neurologist.

Go and enjoy your life. Forgot all this other crap. Lot's of crap in this forum. NO WEAKNESS NO MND.
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Re: Bulbar onset

Postby Ghayes420 on December 13th, 2014, 5:02 pm

Gosh, for once, I agree with you 100%. Sounds like we have been down similar paths, but yours has been longer. Curious if you saw Dr. Smith or Dr. Han while you were at Mass General.

Just curious as to why you are on a BFS site though if you have diagnosed Kennedy's disease? Has it been an official dx? Have you found anyone else on this forum with Kennedy's disease that you can relate or speak with? I don't recall any just in the over three years I have been here.

I obviously am not as versed at Kennedy's Disease as you are, but I am familiar with your comments about 'decades' prior to weakness in this condition.

I don't think you are freaking anyone out by stating facts of Kennedy's disease, especially if that is what you have been diagnosed with.

I agree with your last statement as well, even if you have the genetic marker for ALS at chromosome #9 they aren't going to label you with anything MND related unless you show up with clinical weakness.
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Re: Bulbar onset

Postby RobJ on December 13th, 2014, 5:07 pm

I want to clarify. I didn't say AL$, I said MND.

There are going to be a million thread replies of twitching before AL$ by 10/20/30 years..............I said MND which encompasses a host of disorders with a host of variants that are mild....with some being almost impossible to detect.....you are talking about 1 in 10,000,000 on some of these.

GO ON WITH YOUR LIFE! NO WEAKNESS MEANS NO MND!
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Re: Bulbar onset

Postby RobJ on December 13th, 2014, 5:16 pm

I have not been diagnosed with Kennedy's.

The expert in the area resides at St. Elizabeth's hospital. We emailed back and forth and told me don't bother seeing him unless I have weakness. That was about 3 years ago.

Up to X years ago, can't remember, I thought I had Kennedy's, it was my son's Gynecomastia and twitching that threw me for a loop. As I have Gynecomastia since puberty. He went to Tufts Floating hospital, I was analyzed along with him. They found nothing.

I have something, my son's got something going on, my sister twitches, my neice twitches, my mom twitches......It all started with flu and an abnormal EKG and elevated CPK some 20 plus years ago.
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Re: Bulbar onset

Postby RobJ on December 13th, 2014, 5:49 pm

Sorry for all the emails, I've got several things going on at once.....right now, school work, work, and getting dinner ready.

My diagnosis is Idiopathic HyperCKemia and Chronic Fasciculations.
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Re: Bulbar onset

Postby Ghayes420 on December 13th, 2014, 6:33 pm

Thanks for posting and sharing this info Rob. Good stuff.

I am leaning more and more on their being a genetic link in several cases of BFS.

I know another member and close friend who, without spoiling his story, Mass General is offering genetic testing for free.

Also interesting to note, I started with flu, then heart palpitations seen on EKG (rules benign PVC/PAC), but I haven't had elevated CK yet at the start and 18 months.

I have read a bit about IH. Interesting to note its long term prognosis of a benign outcome in this article on pub med. I know this is an oldie, but seems quite positive and flows with the fact your son has it as supposedly 46% of this being hereditary. I am sure you have seen this one.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3614760/

Interesting stuff.
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Re: Bulbar onset

Postby joycecaroll on December 14th, 2014, 4:38 am

Please, can anybody tell me something about this? I'm freaking out. I'm having daily twitches in my tongue and thid has been going on for 2 months. The twitches are about 5-10 a day, and always in singles.

Is this to infreguent to be the hyperexcitable phase? My EMG of tongue in august showed nothing, not even fasciculations.
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Re: Bulbar onset

Postby TwitchyDoc on December 14th, 2014, 4:41 am

Joyce, most people here confuse fasciculations for normal movements. Not saying it is your case but from my past experience, many claimed to have tongue twitches but when I was asked to assess their video, none has fasciculations (speaking about some newer members).
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Re: Bulbar onset

Postby joycecaroll on December 14th, 2014, 5:05 am

But i feel them? When my mouth is closed. I've seen them too. They look like deep dips on my tongue and feels like a twitch.

Does anybody know anything about frequence? I have one twitch every third hour, maybe. Some days none at all.
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Re: Bulbar onset

Postby TwitchyDoc on December 14th, 2014, 5:20 am

Without a video, it is way too subjective. They are fast, brief and multifocal.
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Re: Bulbar onset

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