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... weakness, aches, lots of fascics, bulbar symptoms, neck "weakness" (it felt hard to keep my neck upright), etc. I ended up in the Mayo Clinic, and despite the fact everything felt so, so wrong, nothing came back abnormal, and all was deemed OK. It didn't feel it, and I couldn't ...
by puggriffey
on May 17th, 2006, 10:44 am
 
Forum: Questions About BFS
Topic: I try so hard, but it's only getting worse
Replies: 7
Views: 1146

Ditto

... so don't be surprised when your right calf is 2 cm smaller than your left, etc. If you read my last posts (around December) when I went off to the Mayo Clinic with a whole slew of troublesome symptoms - MANY of which you describe here - I was sure I was a goner. Several months later, with health ...
by puggriffey
on May 16th, 2006, 8:46 am
 
Forum: Experiences with BFS
Topic: A long story... Can anyone relate to this?
Replies: 4
Views: 1145

Epilogue - Part IV - The Final Words from Mayo and Moving On

... Perhaps. Just like he might. But not as any sort of direct link to what I have now. No chance. And he was not through. He relayed to me that Mayo sees a vastly greater proportion of what they refer to as patients in the "sick role" than probably any other insititution in America. Why? Because ...
by puggriffey
on December 10th, 2005, 1:10 am
 
Forum: General Topics
Topic: Epilogue - Part IV - The Final Words from Mayo and Moving On
Replies: 14
Views: 3289

Epilogue - Part III - The Neuro and a Glimpse at a Diagnosis

One of the most desperate things about the thoroughness of the workup at Mayo was the order for which the consults and tests had to come. Why? Because DEEP into the whole itinerary was the neuro consult. Of course, when you are like I was, you desperately want ...
by puggriffey
on December 10th, 2005, 12:13 am
 
Forum: General Topics
Topic: Epilogue - Part III - The Neuro and a Glimpse at a Diagnosis
Replies: 0
Views: 1239

Epilogue - Part II - The History and Getting Started at Mayo

I am now at Mayo, and convinced I am a hopeless case. I am a combination of ALL of the worst fears and symtoms any *** site has to offer. I am no longer trusting any of my EMG's, as I am convinced they were done in a time before ...
by puggriffey
on December 9th, 2005, 10:59 pm
 
Forum: General Topics
Topic: Epilogue - Part II - The History and Getting Started at Mayo
Replies: 2
Views: 1262

Epilogue - Part I - The "Slide"

... months or so of really good, progressively improving health (physical and mental). I am fortunate enough to now live close to the world reknowned Mayo Clinic in Rochester MN. If you have ever been there, it is a truly remarkable place - a world where the best and brightest doctors, ideas, research ...
by puggriffey
on December 9th, 2005, 9:33 pm
 
Forum: General Topics
Topic: Epilogue - Part I - The "Slide"
Replies: 10
Views: 2000

... mild depression, muscle problems, etc. Her TSH always hovered between 4.3 and 5, so always normal. By the grace of GOD she had a TSH performed at Mayo (they live close by) during her annual physical. Mayo has recently adopted, like most labs now, the new .3 - 3.0 guidelines, and of course, she ...
by puggriffey
on November 15th, 2005, 11:31 am
 
Forum: Experiences with BFS
Topic: POLL: ANY POSITIVE LABWORK?
Replies: 24
Views: 3796

... laugh, because it sure seems suggestive of some sort of viral "reaction" we have; remember, we ALL likely have oddly hyper automimmune systems - Mayo and others suspect a viral cause behind the onset of this, and there is much literature suggesting patients often recall a recent history of viral ...
by puggriffey
on November 9th, 2005, 6:43 pm
 
Forum: Questions About BFS
Topic: troublesome twitches and crampy calves
Replies: 6
Views: 1145

Actually, not to be a dud, but I haven't been around here much, and I'm making up for lost time...

I think you'd need to take that old mayo OUT of the fridge for the ufn to REALLY begin... :wink:


Glad to see you back Aaron. Great post...

JG
by puggriffey
on October 11th, 2005, 5:57 pm
 
Forum: The Lounge (Off-Topic Conversations)
Topic: Bird Flu
Replies: 4
Views: 1045

Same Here

... two, but now it's easily packageable, and not the monster it once was... * You may never trust your neuro. Don't waste time wondering. I went to Mayo during "the storm" and I STILL came away with lingering doubts. How's that? Realize, friends, the mind is SO powerful, that at some point you just ...
by puggriffey
on September 7th, 2005, 7:11 pm
 
Forum: General Topics
Topic: Checking in again after 6 more months
Replies: 4
Views: 1065

... feelings for several months - off and on...mostly on. It was during my periods of feeling "better" - after my clean EMG and visit to Mayo, but well before my current state of stronger well being and coping. I figured it couldn't be anxiety related, as I was having a good time most ...
by puggriffey
on December 6th, 2004, 12:24 am
 
Forum: The Support Group
Topic: need you guys to give me support
Replies: 14
Views: 2156

My trip to Mayo concluded with a "what is it" discussion. The neuro I spoke to there (not a part of the infamous study, but well versed in it) said the prevailing best guess about this type of syndrome is that it is a latent cellular ...
by puggriffey
on September 14th, 2004, 9:02 am
 
Forum: Questions About BFS
Topic: Did you have a Dr. give a theory or shed some light
Replies: 10
Views: 1488

I believe if you are willing to travel, a trip to the Mayo clinic in Rochester MN to see one of their neuromuscular specialists is well worth your while. The visit (my parents live nearby in MN) literally helped me turn the corner - I only wish I could ...
by puggriffey
on August 30th, 2004, 1:32 pm
 
Forum: The Support Group
Topic: Need a Dr recommendation!
Replies: 3
Views: 761

... echoed by ALL of my doctors through this experience, from "Joe Neuro" (who we should all have a LOT of faith in still) to physicians at the Mayo Clinic and the Manitoba provincial neurological centers - world recognized specialists in this area. DIAGNOSIS IN THIS AREA (MND/ALS) IS NOT AS ...
by puggriffey
on July 6th, 2004, 11:53 am
 
Forum: General Topics
Topic: GOTTA READ THIS ABOUT EMGS - super helpful
Replies: 28
Views: 4467

... open up new doors of possible explanation to what we are feeling, imagine my disappointment when this highly specialized endocrinologist at the Mayo Center confirms to me that hormonal imbalances DO present with these symptoms, but they present in patterns and syndromes that are unique to that ...
by puggriffey
on June 19th, 2004, 8:56 am
 
Forum: General Topics
Topic: Anyone here ever see an endocrinologist?
Replies: 10
Views: 1661
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