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healyje
Trad climber
Portland, Oregon
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Feb 19, 2009 - 02:32am PT
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Tar, I have to admit upfront that I fall into the strongly skeptical category on all the life extension / gastro-oriented stuff for general purposes and life 'improvement', mainly because I believe the molecular biochemistry associated with the myriad physiological systems and interactions is poorly understood and are way too subtle and complex for the sorts of conclusions I've seen proffered under those guises. Hormonal issues, though, particularly hypothyroid, are a different matter, but it sounds like that all checked out as well.
That said, I also think finding definitive answers to uncommon, difficult-to-diagnose neuro-muscular problems from 'normal' docs and even specialists is no less challenging - somewhat for the same reasons. And even if you were expressing a lot of autoimmune-related antibodies, treatment would still probably not be a simple or straightforward affair either. In the end there really aren't many 'House' type docs around.
If I were going to do the alt.med / antioxidant thing I'd probably be more inclined to get Chinese on it than anything else - accupuncture and flooding myself with stuff like Zyflamend and Turmericforce. Sounds, though, like you've been through the various mills a couple of times already.
One last thought, not sure if Kenny Duncan follows ST or not, and of course he's an ortho guy, but maybe he or one of the other climbing docs might at least have some thoughts or ideas on any other avenues / people other folks haven't considered yet.
Again, all the best to you in your journey with all this - it must be somewhat maddening to not have a clear bead on the problem.
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Todd Gordon
Trad climber
Joshua Tree, Cal
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Feb 19, 2009 - 03:26am PT
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Things are funky today;....our economy took a big dump and lots of not so good things are kicking our butts today and we have to face challenges and hardships that we have not seen before. But with all the sheit, comes positive things too;....people are starting to think about sharing more, not being so wasteful, and being thankful for what we DO have. Money is way tight, and the future is a big scary mystery.....but we do have each other, and we do have the security of knowing that we are all in this mess together;.....so it's time to get over ourselves, carpool to the crags, share our homes, rides, gear, food, lives, hearts, beer, and pretty much everything......sharing always has been, and always will be ....good for the person who shares and the person who we share with.....I am more than happy to open my home to Bullwinkle ( Who actually lived here for a bunch of years, so I'm sure he'll feel right at home....), and to Roy who I've known and respected as a friend and fellow cragsman for over 30 years....and to the climbing community, who has looked after me so kindly and treated me in a most excellent way for 37 years. My house is your house.....so please join in , see old friends, meet new friends, share with Roy Boy, and see some fabulous images of The Stonemasters by master photographer Dean Fidelman.....should be quite an evening......
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ron gomez
Trad climber
fallbrook,ca
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Feb 19, 2009 - 09:35am PT
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Yer quite the guy Todd....it is a cool community, that of the climbers and hoping that this can all come together to help out Roy and Lisa when they need a bit of support. See ya there!
Peace
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drljefe
climber
Old Pueblo, AZ
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Feb 19, 2009 - 10:36am PT
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Wish I could attend, or contribute monetarily, but all I have to give now are positive vibes. Sending 'em...
All the best to you TAR. jefe
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Tarbuster
climber
right here, right now
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Feb 19, 2009 - 11:02am PT
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Joseph,
Yes I have tried Chinese medicine and acupuncture, eaten bucket loads of Zyflammend, turmeric, a thumb-size wad of ginger daily, and yes C-reactive protein, erythrocyte sedimentation rate, immunoglobline all checked.
This is not a surgical issue.
One EMG study was interpreted to suggest ulnar nerve transposition, but a preponderance of opinions and re-tests emphatically said no.
I could check into MAYO and hand over more of my home than is advisable...I've already leveraged 50% of it's value.
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healyje
Trad climber
Portland, Oregon
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Feb 19, 2009 - 11:09am PT
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Tar,
I wasn't suggesting Kenny relative to a surgical solution, just that maybe he or other climbing docs might have some off-hand thoughts / ideas / people which may be on a different tack then you've already taken. But I definitely understand if you're pretty much done with that whole path - was just thinking out loud as I tend to do when confronted with something this strange and anomolous as this. Simply never heard of such a thing. Sorry to belabor the whole business...
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Tarbuster
climber
right here, right now
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Feb 19, 2009 - 11:14am PT
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It's not Myasthenia Gravis...
Talked to a Dr who does trigger point injection therapy (magnesium & lidocain I think) he said forget it; and also said this thing is so intransigent for so long that it doesn't fit repetitive strain syndromes.
Belabor on ... its constructive & appreciated!
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WBraun
climber
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Feb 19, 2009 - 11:17am PT
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You need to drink some ghee with gold and silver in it.
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healyje
Trad climber
Portland, Oregon
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Feb 19, 2009 - 01:15pm PT
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Well, in that case - yeah, it's all strange in that it's sounds fairly tenacious and yet oddly inconsistent and appears as though you have some sort of 'recovery' period after which you can climb or do other activities (however briefly). This has to be triangulated somehow by biochemical, neurological, and muscular attributes / presentation. Seems like various scans, xrays, chiro, accupuncture, and workups have more or less ruled out [purely mechanical] neurological and muscular related problems.
On the biochemical front you mentioned a whole plethora of various blood workups over time, I would think if this were a chemistry issue of some sort then your [collective] antibody, inflammation marker, and hormonal profiles might provide about the best clues to what might be going on - you don't specifically address antibody workups. From your forearm symptom description it sounds more to be some sort of cascading chemistry failure that the muscles can't easily recover from as opposed to something mechanical. I would guess such a cascade could easily affect both muscles and nerves relative to both pain and fatigue. In general, if it were a mechanical neurological or muscular problem I wouldn't think you'd have the failure modality or recovery capability you talk about.
A real mystery - someone must have seen this phenom before - but it doesn't sound like it's been familar to anyone you've seen. I agree it's probably not the best idea to go all-in on the house to do endless diagnostic expeditions, but still, there has to be someone somewhere who has a handle on this sort of thing.
And this is isolated between your hands and elbow or shoulder and doesn't present anywhere else that you can recognize?
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Jello
Social climber
No Ut
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Feb 19, 2009 - 02:06pm PT
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Roy, I'm with you in spirit and hope to be at this important/exciting event in the flesh, if I'm up to travelling at that time. In either case, look for a check in the mail in the next few days.
You are the Supertopo Champion...THANK YOU!!!
-Jeff
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Tarbuster
climber
right here, right now
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Feb 19, 2009 - 04:05pm PT
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Thanks for the backup Jeff!
Joseph,
I get what you are suggesting with the cascading scenario.
From a layman's perspective, it's not too hard to get the mind wrapped around the concept that given some sort of low-grade systemic problem, the points in the body that had historically taken the biggest hit, (a physiologic low point if you will), and which then require the most resources in terms of maintenance, might be given to a preponderance of recurring symptoms.
Yes, this condition surely seems to be highly localized and bilateral to boot; so you see overall fitness hasn't taken a big hit and my legs are good to go. No problems with the biceps or shoulders either. Sometimes it seems like problems with hamstring tendons and hip flexors get naggingly stubborn and don't want to go away, but never in concert with this weird and persistent muscular fatigue.
The biggest clue relating to concurrent symptoms or systems, really is that I have extreme issues with cold. I absolutely cannot go out in the winter without heat packs in boots and gloves; always with double boots and/or full overboots. I must have 5 layers covering my crotch, and a wind stopper baklava plus a neoprene face cover for my nose, goggles over my eyes to protect all exposed facial skin.
No I do not present with white finger or Raynaud's syndrome.
Again, it is reported that heavy metal toxicity and particularly Mercury will produce cold extremities and I have heard secondhand accounts of people with this that had real problems with hands.
I did undergo a course of DMSA, but oral, as opposed to intravenous, in hopes of chelating heavy metals. I've also undergone a number of other protocols involving glutathione, selenium, and combinations of amino acids to bind heavy metals for transport, yet, this as you said is somewhat iffy nutritionally based metabolic tinkering.
As far as hormone therapy goes: I've done rounds of DHEA, testosterone, cortisol, pregnenalone.
I'd be happy to start throwing up blood work.
(I may not know how to ID antibody profiles)
Wanna take a look?
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dee ee
Mountain climber
citizen of planet Earth
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Feb 19, 2009 - 05:16pm PT
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I'm there.
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healyje
Trad climber
Portland, Oregon
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Feb 19, 2009 - 05:28pm PT
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So your legs / hip get these same symptoms as your forearms - or is it different?
Also, when you talk about being able to get to a place where you can do a couple of pitches of 5.9, is that deterministic, as in you alter some behavior and that delivers a predictable change in your condition; or is it more of a random remissive event that, if and when one happens, you can get out and do that level of climbing?
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Tarbuster
climber
right here, right now
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Feb 19, 2009 - 05:48pm PT
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Thank you for staying with me on this Joseph...
Per the legs: I'm saying I might have persistent tendon problems there, but it's not expressed with the bizarre muscular fatigue and nowhere near as limiting. I can walk and use my legs every day; not so with my hands and forearms.
The second question is just a tad unclear.
To a certain degree it's a little of both.
I know that if I want to do something like a pitch of 5.9, I have to prepare for this event by forgoing most other use of the hands and arms for a number of days prior. So yes, to some degree it is deterministic, I have a shot at it. This is a matter of degree however; when most people think of using their hands to pick things up around the house or get involved in some small project or type something up, they don't give it a second thought. I can get knocked out by doing such things, and the condition can get magnified into something very protracted, say on the order of several weeks recovery.
So what makes this not deterministic, is that I'm very poor at making plans. Things can go bad very easily.
Also for perspective, what I call recovery, is not what you would call recovery. I never have full and complete recovery. The muscles in my forearms hurt all the time, even upon waking. The tendons begin to hurt as soon as I engage in those activities which are predictably going to bother them. So any recovery I experience is quite thin and never complete.
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Rick A
climber
Boulder, Colorado
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Topic Author's Reply - Feb 19, 2009 - 06:00pm PT
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What with all this collective thought from all over, wouldn't it be great if an effective treatment were found? Let's hope.
Great response so far on the auction. There will be some treasures there, for sure.
Rick
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reddirt
climber
Elevation 285 ft
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Feb 19, 2009 - 06:23pm PT
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total random shot in the dark unsolicited idea from layperson:
Guillain-Barré Syndrome?
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rbolton
Social climber
The home for...
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Feb 19, 2009 - 06:34pm PT
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A chance to party with 'bidus AND wreck Todd's house again? I'm SO in.
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healyje
Trad climber
Portland, Oregon
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Feb 19, 2009 - 06:43pm PT
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Tar, thanks for the clarification. I understand any 'recovery' is thin - but it also sounds like it isn't a case where it only goes in one direction - as in down - sometimes it bumps back up even if only quasi-deterministically. That by itself probably eliminates a broad swath of disorders which continually rachet down on you, with any break being characterized as more or less randomly non-deterministic 'remissions' in an otherwise progressive course of disease.
So, marching on, sounds as though the fatigue is muscular and the pain is tendons, any joint / cartilage / spurs / bad arthritis involved? Again, sounds more autoimmune/metabolic than mechanical or neurological - though clearly there is no shortage of chem states that can have significant neurological impact. The heavy metals thing, though, sounds like a real reach unless you know of a specific exposure event and were tested as having a significantly above normal load of one or more of them.
I'm also guessing if you had any serious adrenal or thyroid issues they'd have been addressed long ago in a very straightfoward manner as they typically aren't rocket science to either diagnose or treat. It all keeps bringing me back to being curious about your antibody and inflammation marker profiles / workups and specifically what antibodies and markers you were tested for.
EDIT: Reddirt - hey girl! Not a bad call as GBS has a few different presentations. I had asthmatic climbing partner who took the '76 flu shot and got GBS - a couple of days after the shot he woke up with no ankles and hands, next morning no knees and elbows, no shoulders or hips on the third, and was in an iron lung totally paralyzed by the sixth day. He spent a year in it and another year slowly coming back, but with much permanent muscle loss. GBS usually displays a rapid onset and lower body involvement, but the extent and course can vary wildly. GBS is another case where I would think antibodies would tend to point in that direction.
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Ezra
Social climber
WA, NC, Idaho Falls
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Feb 19, 2009 - 06:52pm PT
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Tarbuster
Antibody profiles would be
Anti-Nuclear antibody
Anti-SSB
Anti-SSA
Anti-Ro
Anti J0-1
Anti DS-DNA (DS=double stranded)
Anti-Centromere antibodies
I know you have seen 3 neurologists, have you seen a Rheumatologist?
Best
Ezra Ellis, MD
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healyje
Trad climber
Portland, Oregon
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Feb 19, 2009 - 06:57pm PT
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Ezra! Someone who actually knows what the hell they're talking about - thanks for jumping in here...
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