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reddirt
climber
Elevation 285 ft
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Feb 22, 2009 - 07:56pm PT
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Ezra, MD seems to be someone whose prolly barking in the right neck of the woods.
On some other fronts, I wonder if the collective Taco can ponder & scheme on how to get Tar:
-on some sort of insurance... esp since the route to a diagnosis has/will be so lab intensive.
-seen by a trustworthy rheumatologist.
One angle I was wondering about is getting Tar into a clinical trial of some sort (which will ease cost of treatment)... but most of the time, one would need a diagnosis first... but then again, the plurality of rheum patients don't have a definitive diagnosis so perhaps there's trials out there based on less specific diagnositic codes???
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Crimpergirl
Social climber
Boulder, Colorado!
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Feb 22, 2009 - 08:00pm PT
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Reddirt - He's got insurance. But as many of us know (and have experienced first hand) having insurance, even so-called 'good' insurance, doesn't mean an illness can crush us financially. I'm looking forward to the party. We'll be there!
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Ezra
Social climber
WA, NC, Idaho Falls
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Feb 22, 2009 - 09:51pm PT
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Tar,
Was thinking about Esophageal dysmotility which can be assocaited with Calcinosis, raynauds, esophageal dysmotitlity, sclerodacly and Telangectasia. The acronym is CREST
CREST is associated with anticentromere antibodies. It lessens my suspicion if you describe thickening rather than scarring.
My most important question of all TAR: Do you smoke? If so you must stop as it absolutely destroys a person's vessels and would likely be the primary cause.
Best
-e
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Tarbuster
climber
right here, right now
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Feb 22, 2009 - 10:27pm PT
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Thanks for noting the distinction Ezra.
I thought you might say thickening and scarring were synonymous.
Not a smoker and aware of the inherent vascular risks.
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Tarbuster
climber
right here, right now
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Feb 22, 2009 - 10:55pm PT
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Ezra,
I've been hoping that triangulation of symptoms might lead somewhere.
Cold extremities and persistent arm pain does lead us to microvascular conclusions perhaps.
I'm not sure how well-versed you are in interpreting the nine pages of numbers revealed through the Metametrix ION panel previously posted. I have no background in physiology or biochemistry so it’s all Greek to me.
A good portion of my internist's therapies respond to an interpretation of these data.
Perhaps, regardless of your particular or specific training, looking at a change in a group of these numbers, specifically the organic acids (shown below), will instruct you as to my ability to respond. Does my body’s ability to absorb the essential nutrients to rectify the state of my organic acids tell you something about my overall state of health and likewise continue with our differential diagnosis, (if that's the correct term)?
I’ve used the original report as a template.
Again, the first set of numbers dates from August 17, 2007.
The changes are noted in red, from a draw dated February 11, 2008.
You’ll note nearly the entire schedule of values moves to the left, which was the intended result, and essentially concluded, aside from more aggressive detoxification, the efforts of my internist to affect a change in my systemic constitution.
Thank You
Roy
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Todd Gordon
Trad climber
Joshua Tree, Cal
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Feb 23, 2009 - 12:37am PT
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Special offer;....while you are at Joshua Tree, if you onsite this climb and donate over $500.00....Roy will kiss you on the lips.....(boy or girl;...don't matter.....).....limit of 10 kisses per person........(I practiced the climb today, to get the moves down.......)...rare opportunity.....(wait a minute;...is my hand on that draw?....)
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Mighty Hiker
Social climber
Vancouver, B.C.
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Feb 23, 2009 - 02:18am PT
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That sure is a lot of tests - I had no idea that so many were possible. Well, time spent in reconnaisance is never wasted - hopefully some rheumatological wizard will appear, and help Roy.
"When you have eliminated the impossible, whatever remains, however improbable, must be the truth."
 Sherlock Holmes/Arthur Conan Doyle
Have they considered whether wearing a cowboy hat may be a factor? (OK, just teasing.)
I hope to make the event on the 25th, perhaps combining it with a modest road trip and some climbing. It would be for a very good cause, plus a chance to see old and new friends. (Self-persuasion is a delicate art...) And in the meantime, good luck to tarbuster as he negotiates the shoals and rapids of life, and let's hope that he soon comes to friendlier waters.
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graniteclimber
Trad climber
Nowhere
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Feb 23, 2009 - 02:42pm PT
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bump back to first page.
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Russ Walling
Social climber
Upper Fupa, North Dakota
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Feb 23, 2009 - 03:45pm PT
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Ready to belay...
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healyje
Trad climber
Portland, Oregon
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Feb 23, 2009 - 07:13pm PT
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Tar, glad to see you guys are still at it...! Ezra, good feedback all the way around from the looks of it.
Revisiting all this I keep coming back to the notion of something as localized as forearms, even bilaterally, manifesting symptoms means mechanical, neurological, vasuclar, or autonomic problem[s]. It's still quite hard for me to imagine a scenario where your general nutritional chemistry could play a major role in this without some pretty extrordinarily out-of-whack numbers showing up like an alarm in your blood work and you presenting far more wide-ranging symptoms. Even in the case of an autonomic problem it seems strange you'd be presenting as localized a set of symptoms as you seem to be. I also have a pretty hard time with any suggestions of EMF causality, and even more with the idea 9-volt battery-driven electronics could add anything to our already cluttered EMF profiles which would change our physiology in any marked, predictable, or cognitively recognizable way.
If parasites are ruled out, it still seems you'd be better off finishing up with the vascular and rheumatology end of things as something interferring with, or attacking, your muscles seem reasonable remaining paths to scout.
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looking sketchy there...
Social climber
Latitute 33
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Feb 23, 2009 - 08:29pm PT
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There will be "kickass" auction associated with this event. Books, photos, gear, historical stuff (not just the old dude[ette]s). Contact RickA -- upthread -- to donate stuff.
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Tarbuster
climber
right here, right now
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Feb 23, 2009 - 09:14pm PT
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Walleye:
Please contact Rick Accomazzo for auction item contributions:
raccomazzo@bmalaw.com
Healyje:
I get your conclusions.
As you said you had emailed Collier, please forward me his response?
I'll look into it a little further on my end & see if he's in network, clear the path with referral if necessary.
I've received some cash donations via mail from some terrific people here on the Forum.
This includes some PT known as MAT, which is being used by sports teams. (Thanks BrassNuts).
Will entertain a half dozen sessions, care of those who've donated.
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Ezra
Social climber
WA, NC, Idaho Falls
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Feb 23, 2009 - 10:06pm PT
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Tar,
I think Healy is right on on his last post. It is unlikely that an amino acid disorder would present as a localized forearm issue. Certainly amino acid disorders can cause muscle wasting and atrophy, but they typically would present in the Teenage years at the latest. (Homocystine being an obvious exception to that rule).
I'm really not competent in interpreting all of those amino acids. One thing to remember is that 5% of people who are read as abnormal on any given test are actually normal. This is because "normal" is defined as the mean plus or minus two standard deviations.
Any ways, we're all pulling for you.
best
-e
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healyje
Trad climber
Portland, Oregon
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Feb 23, 2009 - 10:23pm PT
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Tar, I'll get back to you as soon as I hear from him...
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healyje
Trad climber
Portland, Oregon
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Feb 24, 2009 - 02:33am PT
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Tar, got to digging around the whole compartment business. Apparently almost the entire body of work and knowledge around this is based on lower extremities. There are also a couple of varieties with differences between acute and chronic exertional (CECS) forms of the syndrome. Reported instances of forearms seem to be relatively rare. Because of that it looks like they try to associate it with young athletes, but I suspect that's just all they've seen.
Not sure the standard (leg-oriented) testing would necessarily pin it down. Doing a [url="http://www.google.com/search?hl=en&q=cecs+forearm" target="new"]google search[/url] turns up some interesting reading and I see there is even a pressure study using healthy rockclimbers showing some folks are at least on the scent of it all in this direction. Not sure I'd rule this one out just yet and I'd probably bring it up with any rheum or vascular guys you talk with - and definitely not let them discount it or necessarily attempt to diagnose it like they would CS of the leg.
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healyje
Trad climber
Portland, Oregon
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Feb 24, 2009 - 02:47am PT
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EDIT: scratch the below as I see you already mentioned TOS - sure that was conclusively ruled out? I'm rereading and see in that post you did see a vascular guy (sorry I missed that up to now) - still, I'm not sure I wouldn't revisit the whole [url="http://emedicine.medscape.com/article/1269081-overview" target="new"]CECS business[/url] if I were you.
Tar, another couple of questions, does this ever involve any weakness or tingling in your fingers and if so, any particular ones more than others? And is this ever accompanied by tingling or discomfort around your lower neck or top-inboard shoulder area?
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Prod
Trad climber
A place w/o Avitars apparently
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Feb 24, 2009 - 11:01am PT
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Well Pilgram what are you waiting for? Get your ass to the Stonemaster benefit...
Although I'll most likely not make it.
Prod.
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Tarbuster
climber
right here, right now
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Feb 24, 2009 - 12:58pm PT
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Healyje:
Your vigilance is appreciated.
Between you and Ezra, (and everybody else who is following this),
I’ve got some good company here in the “shallows” as Mighty Hiker put it.
CECS,
I am aware of the pressure tests and haven’t sought one.
(I believe this test and the corresponding fasciotomy were previously suggested by Spectreman here on the forum, who is a physical therapist)
Yes I mentioned the pressure test to the vascular surgeon who performed the Doppler evaluation, but it wasn’t a direction he saw fit to go. (You may remember, I worked a handgrip before his eval, in attempts to produce findings which might not have been felt at rest). At best, he suggested seeing an orthopedic hand surgeon or muscle neurologist, who might be able to investigate further along those lines, although he was completely baffled that there were no findings in that direction. So he quizzically framed these as investigative longshots.
At this point I may be amenable to testing intracompartmental pressure (ICP). However, I have to consider that CECS is not consistent with reports of chronic pain, as it is observed to be exercised induced.
The following description is directly at odds with my experience, as I distinctly present with unprovoked fatigue and pain: at rest.
The pain slowly resolved on cessation of the exercise but recurred each time this exercise was performed. There were no forearm symptoms when he was not weight-training.
TOS,
Many evaluations have ruled this out.
When I posited the possibility of TOS related exercise induced ischemia, which only shows up during specific activities and is remedied through resection, the vascular surgeon still wasn’t going for it, but said that if I wanted to do a CT Angiogram, while entertaining various ranges of motion, that I could pursue this, for a few thousand dollars.
Tingling at the neck, inboard shoulder area, and individual fingers: negative.
Health Insurance:
It is time I lay this out plainly.
In 2001 my rates doubled overnight; at that time I had excellent coverage w/ $500 deductible and very low office visit co-pay.
I now have a $5,000 deductible with no co-pay.
This is essentially catastrophic coverage, and in any particular year $5000 out-of-pocket, is always over my budget, and rarely completely recognized in network well enough to meet the deductible.
Again, “expeditionary” efforts, as you so aptly described them upthread, in light of my mounting debt in this regard (due to yearly expeditionary efforts), become increasingly sketchy propositions.
Currently on the block:
(my strategy is to see the Reumatologist and discuss prioritization of some of the other therapies/avenues listed below, before engaging any one of them, except MAT, which I'm already doing).
Dr Collier, Rheumatology: I can get in to see in June or July, over an hour’s drive.
Dr Perkins, Rheumatology, Colorado Center for Arthritis & Osteoporosis: I can see next month here in Boulder.
(Dr. Perkins comes highly recommended by a local nurse practitioner, who BTW, is one of his patients and concurs with your idea that I should next try a Rheumatologist)
ICP/CECS testing: from the links you provided it appears that the rheumatology department is an intermediate route to this test.
CIALIS: Ezra recommended this as a microvascular therapy, I can put a call in to the vascular surgeon and see about getting a prescription.
ASTYM: a stimulus protocol (recommended by Spectreman) for alleviating fibrotic conditions & tendonosis.
PRP: platelet rich plasma injections (as recommended by granite climber & noted in NYT)
MAT: muscle activation technique, a manual physical therapy, purported to remedy chronic muscle splinting/spasm & activate/optimize muscle firing, currently scheduled out over the next three weeks. Something I hadn’t previously tried.
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Crimpergirl
Social climber
Boulder, Colorado!
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Feb 24, 2009 - 01:27pm PT
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Tar: If you need a ride to see Collier or Perkins, let's coordinate. Happy to help...
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