Search found 45 matches: +mayo

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... impact on our lives, in addition to the merits of PNHE and/or whether the 2 category A patients in some study invalidate the conclusions of the Mayo paper. Despite what you may want to believe, not all of us have to be so self-limiting in what we think, say and write. Don't you think maybe some ...
by puggriffey
on July 15th, 2006, 6:15 pm
 
Forum: General Topics
Topic: Update--on benzos, jaw fatigue
Replies: 121
Views: 33360

... real, very prevalent (more so than any of the above accepted ailments by ANY fact-based standard) problem. Even the world reknowned doctors at the Mayo Clinic will readily tell you that vastly more than half of all the cases they see have no clinical diagnosis to be made. Are the symptoms real? ...
by puggriffey
on July 14th, 2006, 9:54 pm
 
Forum: General Topics
Topic: Update--on benzos, jaw fatigue
Replies: 121
Views: 33360

... About all she didn't stop doing was seeking clinical answers - specialists in Houston, neuros in university centers. She PM'd me twice after my Mayo posts (were those SUGARCOATED ENOUGH FOR YOU DAVE??) to wish me luck, and tell me she was running out of hope... And then she killed herself. Months ...
by puggriffey
on July 14th, 2006, 12:37 pm
 
Forum: General Topics
Topic: Update--on benzos, jaw fatigue
Replies: 121
Views: 33360

... I think it clear at least in my own experience based "trial" that a somatic syndrome - the "sick role" as it was defined by my Mayo doctors - WAS EVERY BIT RESPONSIBLE FOR MY PHYSICAL SYMPTOMS, and there is no other reasonable conclusion to draw. I am now three weeks or so twitch ...
by puggriffey
on July 13th, 2006, 12:14 am
 
Forum: The Support Group
Topic: Bigger fish to fry
Replies: 50
Views: 7972

... here to contract this disease after the all clear. Imagine that - not even SIX EMG's could get me to a point where I felt well. I ended up at the Mayo Clinic in December and January - poked and prodded and checked and examined. Thorough, extensive, fair, intensive - for a week. Feeling lifeless, ...
by puggriffey
on June 19th, 2006, 8:32 pm
 
Forum: General Topics
Topic: I thought I've hit rock buttom
Replies: 10
Views: 1641

... the other direction sometimes spurs on these "new" feelings that throw us into a whole panic all over again. That said, the endo at Mayo said he has never heard of an endo condition that features twitching, other than thyroid conditions, which I apparently don't have. Hope that helps ...
by puggriffey
on June 16th, 2006, 7:27 pm
 
Forum: General Topics
Topic: Endocrinology
Replies: 2
Views: 627

... or down diagnosis from ANY doctor (believe me, soon you will start considering holisitc doctors, or trying to figure out how you can get into the Mayo Clinic or Clevelnad Clinic - it will not help) and you CANNOT RELY UPON YOUR BODY TO GIVE YOU THE ALL CLEAR EITHER. The same strange stuff going ...
by puggriffey
on June 14th, 2006, 11:45 am
 
Forum: The Support Group
Topic: Neurosurgeon today
Replies: 6
Views: 741

... to recovery. I've been there. It is an endless cycle that never produces anticipated results. I checked out all clear from the world reknowned Mayo Clinic for God's sake (how did I even get so blessed to get in there??), and left with doubts. It is only when I took control of my own mind, my ...
by puggriffey
on June 8th, 2006, 8:25 pm
 
Forum: The Support Group
Topic: Second neuro escapade
Replies: 25
Views: 3247

... know - if you are like me, you are saying "well DUH, but what if this is the START, and I can feel it beginning...". Don't sweat it. The Mayo neuros, including the head of their **S center stated definitively to me that bulbar onset is almost NEVER something patients "feel coming ...
by puggriffey
on June 2nd, 2006, 2:08 pm
 
Forum: Questions About BFS
Topic: Help, Scared with speech issue
Replies: 13
Views: 5453

... atrophy and erosion of the tongue when the nasty fasciculations settle in. So sayeth the two neuros I've spoken with on this - including one at Mayo who simply said "the tongue is a muscle(s) like any other" and left it like that. ESPECIALLY in this area of the body, the sinister fascics. ...
by puggriffey
on May 26th, 2006, 2:03 pm
 
Forum: Questions About BFS
Topic: HELP!!!!
Replies: 5
Views: 788

... less firm than my left. This much I KNOW. But you know what? I've been at this 28 months now - 5 EMG's, full neuro workups, a complete exam at the Mayo Clinic including their head of the ALS center there performing the EMG, etc. etc. etc. - and NOTHING IS CLINICALLY WRONG. Nothing. THAT IS GOOD ...
by puggriffey
on May 26th, 2006, 1:41 pm
 
Forum: The Support Group
Topic: Time to vent!!!! Lymes = NEGATIVE
Replies: 16
Views: 2033

Mel- They are lengthy "missives", but if you are up to it, search on my posts for the Mayo "Epilogue" I wrote (yes, I know I'm back and it's no epilogue anymore, but give a poor sap a break...) I was in a BAD way when they did my EMG at Mayo - and it ...
by puggriffey
on May 24th, 2006, 8:04 pm
 
Forum: The Support Group
Topic: losing it again! PLS support needed!
Replies: 9
Views: 1096

... these were ominous bulbar signs, I'd be dead and a half right now...no way there's a problem. Also, FYI, when I had my most thorough EMG done at Mayo, the doc declined to do a tongue EMG - said they were notoriously difficult to ensure quality readings, and that anything the EMG picked up in ...
by puggriffey
on May 23rd, 2006, 9:47 am
 
Forum: Questions About BFS
Topic: who here has tounge twitching??!!!!
Replies: 15
Views: 2345

... early bouts with BFS - this felt body wide, extremely scary and overwhelming. Now I was caught in the doctor/ER cycle, and somehow I ended up at Mayo Clinic with a full battery of tests, specialists and evaluations - looking for and at very scary stuff, including the **S I was SURE I now had. ...
by puggriffey
on May 17th, 2006, 6:29 pm
 
Forum: The Support Group
Topic: now really scared
Replies: 24
Views: 3669

... often described as "easily"). This is also a fallacy - if you can't swallow due to bulbar ALS, you CAN'T SWALLOW. While at my recent Mayo visit doing an extremely unnecessary swallow test (that I insisted on), the fine doctor showed me my X-ray, and then showed me an "impeded" ...
by puggriffey
on May 17th, 2006, 10:55 am
 
Forum: Questions About BFS
Topic: Help Me Please!-Scared to death due to Possible Bulbar Onset
Replies: 15
Views: 3091
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