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Comments about my revised symptoms?

PostPosted: March 9th, 2015, 3:49 pm
by misterjuanperalta
Hi,

Please comment, and opine.

viewtopic.php?f=5&t=20814&p=156544#p156544

Thanks

Re: Comments about my revised symptoms?

PostPosted: March 11th, 2015, 1:06 pm
by Buzznerd123
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Re: Comments about my revised symptoms?

PostPosted: March 11th, 2015, 4:37 pm
by misterjuanperalta
DX by doctor. The myotonic dystrophy was an impression by doctor, not a firm diagnosis.

Re: Comments about my revised symptoms?

PostPosted: March 12th, 2015, 4:58 am
by Buzznerd123
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Re: Comments about my revised symptoms?

PostPosted: March 12th, 2015, 5:58 am
by misterjuanperalta
Yes. USA. Going to Mayo Clinic soon.

Re: Comments about my revised symptoms?

PostPosted: March 16th, 2015, 9:21 pm
by BFSBurger
Buzznerd123 wrote:this is extremely severe stuff, are you for real with these diagnoses?


There's a couple people here (i forget the guys name now) who had stuff so severe that he was sleeping on his wood floor with his arms and head pinned down with weights just so he could sleep.

So I guess BFS comes in quite a spectrum of severities.

I wont tell you what changes he made that helped his symptoms. I dont want you to roll your eyes. But he did post that he was making progress. Never saw such a bad set of symptoms in my time on here.

-B-

Re: Comments about my revised symptoms?

PostPosted: March 17th, 2015, 5:14 am
by Buzznerd123
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Re: Comments about my revised symptoms?

PostPosted: March 17th, 2015, 6:52 pm
by misterjuanperalta
The myotonic dystrophy DX has to be evaluated because it was a clinical impression. It was not a firm, definitive DX.

Re: Comments about my revised symptoms?

PostPosted: March 18th, 2015, 5:56 am
by Buzznerd123
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Re: Comments about my revised symptoms?

PostPosted: March 18th, 2015, 10:48 am
by misterjuanperalta
Affirmative, in the Temporal area, positive sharp waves.

Re: Comments about my revised symptoms?

PostPosted: March 18th, 2015, 11:26 am
by Buzznerd123
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Re: Comments about my revised symptoms?

PostPosted: March 18th, 2015, 11:58 am
by misterjuanperalta
This site seems to hint to it.

"We reviewed the notes of patients seen between January 2010 and February 2012 in two hospitals in Greater Manchester, England, who had been tested for the presence of VGKC Abs, following presentation with ‘unexplained adult onset epilepsy.’ This was defined as focal or unclassified epilepsy, with onset in adult life in patients with no history of cerebral insults and no epileptogenic lesions identified on MRI scanning using appropriate imaging protocols."

Source: http://www.sciencedirect.com/science/ar ... 1113001830

Regards

Re: Comments about my revised symptoms?

PostPosted: March 18th, 2015, 9:55 pm
by BFSBurger
Buzznerd123 wrote:I think the most dramatic improvement was suziq, she was messed up with suspicion of MS and now she's symptom free.

Yup. Who do you think I got 50% of my direction from on how to recover from BFS? Surprise. Not kidding dude. Partially because my entire symptom-set was MS-esque as well. Almost to the "T". I can't quite remember, but that may very well be why I contacted her in the first place. Even my doctors told me I probably had MS.

Remember when I told you that I don't know one person here who is symptom-free and "doesn't know why" ? She was one of the main people I had in mind. She knows exactly what she credits her recovery with. She took some major steps. And I took her advice to heart, and it worked. Chrissy is another who has come a million miles from her worst days, and I believe she is virtually symptom free, if not 100% symptom free at this point. She has the most brilliant advice of anyone on here. She now helps others to recovery. And has had significant success doing so.

What I've noticed overall is that people that improve dramatically do so in the first year or two after symptom onset, you included, but that might be just my impression.


I think that's true. There is definitely an initial worsening, along with a severe period for most, which is followed by a lesser severity. I truly feel that it's what you do during that acute phase, and the months following it, that can play a role in where you end up at the 2-4 year mark.

-B-

Re: Comments about my revised symptoms?

PostPosted: June 23rd, 2015, 7:32 pm
by pbohan