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Re: Mayo Study

Anyone notice that the www.pnhe.info site is no longer accessible? Is it just me having this problem, or is there a problem with that site? I used to refer my docs to it occasionally, as well as a friend who had the twitching, but can't any longer.

Anyone?
by puggriffey
on April 30th, 2009, 7:32 pm
 
Forum: General Topics
Topic: Mayo Study
Replies: 37
Views: 3529

A Quick Stop In to Say Hi!!

... than the day before I first googled twitching and sent my life into a temporary hell. I am a veteran of 7 (yes, 7!) EMG's, a full work up through Mayo in MN, and numerous Neuro, Endo and other "-Do" visits over three + years of constant worry and self examination. It was hell - I know ...
by puggriffey
on March 3rd, 2009, 1:35 am
 
Forum: The Support Group
Topic: A Quick Stop In to Say Hi!!
Replies: 7
Views: 1016

... reassurance you will get - or need - is that of your own inner voice. Listen to it (or at least let it find a voice within you). I went to the Mayo Clinic, and was thoroughly examined and declared all good by the neurology team there. No guarantees offered there either. That is just not medically ...
by puggriffey
on April 2nd, 2007, 11:21 am
 
Forum: Questions About BFS
Topic: Feet twitching: unnerving + frightening - need your opinion!
Replies: 9
Views: 1310

... I have had all you describe (some often) and much much more for a long time. Have explored all the theories, including extensive testing at the Mayo Clinic for all sorts of things. Lots of dead ends. In the end, it was fruitless, and I now know it was fairly pointless anyway. I still have all ...
by puggriffey
on February 24th, 2007, 12:06 pm
 
Forum: General Topics
Topic: BFS or Metabolic disorder?
Replies: 22
Views: 2468

... the impact of an infection can be felt as pressure, tightness, or a whole host of other "sensations" in the face, neck, head, etc. The Mayo neuros definitively stated that eye twitches are benign, and that the "tingling in the head" is another VERY common complaint they often ...
by puggriffey
on January 25th, 2007, 11:20 am
 
Forum: Symptom Management
Topic: facial problems
Replies: 13
Views: 2954

... They are a litany of identical things that you are experiencing. It was the neck thing that threw me into a tizzy and ultimately sent me to the Mayo convinced my end was coming. I know the feeling and I HATE it, but guess what. It is as benign as the rest of this shyt. I usually get this when ...
by puggriffey
on January 24th, 2007, 4:54 pm
 
Forum: Experiences with BFS
Topic: Neck tired and throat problems
Replies: 9
Views: 1713

The neuros at Mayo Clinic, including the head of the **S unit there, stated unequivically that eyelid twitches are always benign. They found it very telling that mine started in my eyelids/eye area, and were widespread. The **S neuro ...
by puggriffey
on January 21st, 2007, 1:24 am
 
Forum: General Topics
Topic: clean emg still worry about ***
Replies: 10
Views: 1719

... as they ever were, especially once they move past this. I do believe this takes a near-term "toll" on the nerves and muscles - the Mayo neuro I saw called it pronounced "deconditioning", and that does mean that in the near term, we feel more sore, more "off" ...
by puggriffey
on January 6th, 2007, 11:52 am
 
Forum: The Support Group
Topic: Muscles in use
Replies: 14
Views: 2664

Unfortunately, I went to Mayo for a workup last year, and while they recognize that a body of patients exists out there that suffer from a constellation of symptoms that represent "a condition of benign cramps and fasciculations...", ...
by puggriffey
on December 18th, 2006, 3:54 pm
 
Forum: General Topics
Topic: "Undiagnosable” neuro muscular disorders
Replies: 4
Views: 943

Drummer- Here's an early X-mas gift for you. A year ago when I was seen by a neuro at the Mayo Clinic, one of the world's top medical institutions, he said during my examination (quoting): "...the fact yours started in your eyelids is also significant, as eyelid ...
by puggriffey
on December 16th, 2006, 7:44 pm
 
Forum: Questions About BFS
Topic: kind of anxious...
Replies: 10
Views: 1229

... bad, or in between - it came and went without incident. MUCH preferable to the full blown four month panic of last year that culminated in the Mayo Clinic, countless tests and a LOT of lost days...for every one of you on here, I sincerely KNOW you WILL make it through this and this does not ...
by puggriffey
on November 24th, 2006, 12:50 am
 
Forum: The Lounge (Off-Topic Conversations)
Topic: Happy Thanksgiving everyone
Replies: 5
Views: 868

... then it was perfectly normal, so they were convinced it was just "one of those things", and nothing wrong. I've had one ANA since (Mayo did it as a part of their comprehensive workup) - it was fine. They do like to monitor it to see which direction it goes, but I've known other ...
by puggriffey
on July 19th, 2006, 12:42 pm
 
Forum: Experiences with BFS
Topic: Question about my blood test results
Replies: 5
Views: 985

... in Fellow's curious post is entirely second-hand, and would be disputed greatly by every neuro I saw. That INCLUDES the head of the **S Center at Mayo Rochester, who specifically told me that the diagnosis of **S IS DEFINED BY THE HALLMARK FEATURE OF CLINICAL WEAKNESS. Do I dispute this man and ...
by puggriffey
on July 16th, 2006, 10:22 am
 
Forum: General Topics
Topic: Update--on benzos, jaw fatigue
Replies: 121
Views: 34519

... **S twitches are typically fine and not always even noticed by the patient prior to visiting the doctor. And I found it very surprising when my Mayo neurologist (head of their **S center) took such great interest in the fact my twitches started in my eyelid - his comment was that that is an ...
by puggriffey
on July 15th, 2006, 10:54 pm
 
Forum: Symptom Management
Topic: Can a Pituitary Disorder and Hashemotos cause BFA?
Replies: 14
Views: 3356

... technically the two with MND were never part of Group A or B. And let's say for a minute I'm wrong--does that necessarily fly in the face of the mayo clinic considering all of group A had at least fibrillations, which would excluse the possibility of a "clean" EMG and therefore not ...
by puggriffey
on July 15th, 2006, 7:12 pm
 
Forum: General Topics
Topic: Update--on benzos, jaw fatigue
Replies: 121
Views: 34519
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