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reddirt
climber
Elevation 285 ft
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Feb 19, 2009 - 06:59pm PT
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Rheum... a good suggestion.
Know that a good rheum is difficult to find... we went thru 3 different ones recently before settling on the 4th at Hopkins. They seemed wildly different in competence. After a year & half, I finally have my climbing partner back, almost.
BTW, the Hopkins guy said that the plurality of his pts do not have a definitive diagnosis & are treated symptomatically.
Hang in there & keep us all posted! Sending you the best vibes!!
(edit: HealyJe! Hope all is well & our paths cross again : )
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reddirt
climber
Elevation 285 ft
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Feb 19, 2009 - 07:01pm PT
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If by some long chance it turns out to be GBS, just know that there's a 30 yr veteran Exum guide out there who had it & still (can) guide... : )
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Clint Cummins
Trad climber
SF Bay area, CA
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Feb 19, 2009 - 07:09pm PT
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Roy and Joseph,
Thank you for providing these details on the symptoms.
I wish I was an MD like Ezra and could help with the diagnosis.
I can offer one positive story. My climbing partner developed severe pain in his knees and ankle/heels, which stopped him from climbing, and he could barely work. He went to several doctors; none could diagnose it. Eventually, he and his girlfriend started looking around on the web and were able to make the diagnosis themselves: Psoriatic Arthritis.
http://arthritis.webmd.com/psoriatic-arthritis/psoriatic-arthritis
His doctors hadn't taken a proper history and didn't realize that he had psoriasis since he was a kid.
There some pretty effective (though expensive) drugs which clear up the symptoms by suppressing this autoimmune problem. He's back climbing strong again.
I doubt this is your diagnosis, since it sounds like the problem is more in your arms than leg joints. But on the off chance you have psoriasis, of course you should check it out (the page also suggests the joint symptoms can in some cases show up before the skin symptoms). Keep working on the diagnosis - finding someone with the right knowledge is key, and not easy.
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Ezra
Social climber
WA, NC, Idaho Falls
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Feb 19, 2009 - 07:17pm PT
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Can't be Guillan Barre Syndrome
He'd be dead by now, it is an acute process.
Could be the chronic form of it CIDP Chronic inflammatory Demyelinating polyneuropathy, although doesn't sound likely. Any neurologist worth a S*&T would figure that out.
I am really at a loss to explain the symptoms. Thought about Lou Gherigs or something (aka amyotrophic lateral sclerosis), again any half competent neurologist would determine that one. Thought about Multiple sclerosis or even Vitamin B12 deficiency. Sounds like they have been ruled out.
I'm really not competent to diagnose in this area, would definately see a rheumatologist if you haven't already.
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Tarbuster
climber
right here, right now
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Feb 19, 2009 - 07:25pm PT
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I haven't seen a rheumatologist recently.
Very early on, when the tendons were persistent problem, I did.
Frankly, this is on my shortlist, next in line when I feel like throwing some more money at it. Ricky recommended a good one here in town who his wife uses.
A lot of doctors and practitioners have looked at my films; there really is not any osteoarthritis to speak of, grade one at most.
Ezra,
Thanks for the clarification on the antibody numbers I don't believe I have them.
Anybody have any experience with a physical therapy modality known as MAT?
I just had a gracious super topo member pledge to pay for an initial session and spent the last 45 minutes on telephone with the practitioner.
Lou Gehrig's and multiple sclerosis, pretty well ruled out.
I have taken numerous vitamin B-12 shots, no results.
No psoriasis, thanks Clint.
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Ezra
Social climber
WA, NC, Idaho Falls
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Feb 19, 2009 - 07:45pm PT
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Tar.
Have you had a muscle biopsy?
I'd go to University of Colorado Department of rheumatology before I went to Mayo.
Did you see neurologists at Univ of colorado?
'bout all i have to offer.
Best
-e
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Crimpergirl
Social climber
Boulder, Colorado!
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Feb 19, 2009 - 07:45pm PT
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Aren't friends great? And there are no better climbing friends than climbing friends. :)
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WBraun
climber
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Feb 19, 2009 - 07:47pm PT
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Yeah I'd listen to Ezra.
He's on to something here.
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Tarbuster
climber
right here, right now
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Feb 19, 2009 - 08:02pm PT
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Ezra,
I was set up to see a neurologist at the CU Health Sciences Center in South East Denver, where if deemed necessary, a muscle biopsy would be performed.
I was sent instead to have nerve conduction studies done by a neurologist who had specific experience with continuous muscle fiber activity, or stiff man syndrome, which was one of the chief cluster of concerns, and as those were ruled out, the idea of a biopsy was shelved.
Also my understanding was that they don't do a local biopsy, like for me in the arms to look at a local condition, but they typically take a "chunk' out of the leg in pursuit of isolating more generalized muscular issues, which I do not present.
Thanks for your ideas!
Maybe we can get this thing figured out and then all go to happy hour for a Ghee & silver & gold cocktail...
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Ezra
Social climber
WA, NC, Idaho Falls
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Feb 19, 2009 - 08:06pm PT
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Tarbuster,
You are correct. They usually do a large muscle group.
Only one last question. Have they ruled out Myasthenia Gravis (anti-acetyl choline receptor antibodies)?
I believe you said they had ruled that out.
Also have you tried prednisone, cyclosporine, or Rituxan (anti CD20, a B-cell marker) and if so, what were the results?
best, -e
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Tarbuster
climber
right here, right now
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Feb 19, 2009 - 08:09pm PT
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Yes I thought there might be issues with/effected by an acetylcholinesterase.
I think that's what they feed you to shut down the acetylcholine process as an aspect of muscle firing sequence.
But, again, Myasthenia just comes with too many other concurrent symptoms which I don't present, such as problems with the eyes and throat and neck: all kinds of bizarre unfortunate stuff like that...
And no, no uptake of those items which you just mentioned.
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Tarbuster
climber
right here, right now
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Feb 19, 2009 - 08:14pm PT
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Joseph was driving at something that is key I think,
Which is that this is a fairly static situation at this point and has been for a number of years.
Most of these other things continue to worsen, are degenerative, progressive.
I'm getting worse, but it's very very slow.
And I'm not really losing power, just the ability to apply it on a routine basis.
No distinct muscle atrophy.
Obviously, the muscles are not what they would be if I used them a lot.
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Double D
climber
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Feb 19, 2009 - 08:15pm PT
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Roy,
I may be completely out of line here, but shouldn't you address the (serious) cross-dressing issues first and then take it from there?
I'm just say'n...
(-;
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Tarbuster
climber
right here, right now
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Feb 19, 2009 - 08:17pm PT
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I have Peter Haan putting that to be- ...I mean sorting that one out.
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Tarbuster
climber
right here, right now
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Feb 19, 2009 - 08:26pm PT
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Yes I think it would be nice to turn over the rheumatologist card.
Yes it would be cool to see a hand surgeon here in town who John Sherman highly recommends.
Anyway with all this keep in mind that I retain excellent muscle tone, enjoy outstanding coordination, experience no shaking or anything strange...
We're essentially talking about an experience of chronic localized fatigue, in the muscles and tendons.
Lower arms only, but evenly bilateral.
(I'll also put this on my list: prednisone, cyclosporine, or Rituxan)
Thanks Ezra.
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AKDOG
Mountain climber
Anchorage, AK
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Feb 19, 2009 - 08:42pm PT
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Good luck Roy, sorry to hear you are not getting better.
Guilliam-Barre or any other peripheral neuropathy would have been ruled out during the NCS/EMG testing by the neurologist. Myasthenia gravis or other disorders of neuromuscular transmission was most likely ruled out by physical exam but could be tested with a repetitive nerve stimulation test.
A Rheumatologist or other practitioner with experience with autoimmune diseases may shed some light. I also remember you having frostbite of your hands, I treat fair amount of frostbite and long term many of my patients develop joint involvement, (some theorize it is freezing of synovial fluid), but x-rays would have shown joint changes.
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Tarbuster
climber
right here, right now
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Feb 19, 2009 - 09:09pm PT
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Hi Doug!
Thanks for stepping in with that bit of knowledge as a physical therapist.
Any chance you coming down off the hill to hang out with the old gang for this thing?
The frostbite surely affected my hands, and does provide some history as to why my hands are always cold, same with my feet, but just a little bit of exposure, not even chill blane, to face and crotch last couple of years has been met with no further recovery by my body... very strange.
As for the problem we are discussing, it seems it only involves my hands in so much as the muscles and tendons upstream in the forearm are so critical to the function of the hands.
I wouldn't say I have problems with my hands in performing daily tasks, if I were to speak of them in an isolated fashion. The joints in my fingers have never fully recovered from that frostbite it's true. But that's livable, and climbable up to about 5.10 plus or 5.11 minus, given the arms would provide necessary supporting role as they are intended.
The elbow and wrist joints were not subject to frostbite.
Now it's possible, that overtime, having somewhat compromised fingers has led to overcompensation in the muscles and tendons upstream. I have thought of that, but it seems conjecture at best.
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Ezra
Social climber
WA, NC, Idaho Falls
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Feb 19, 2009 - 09:16pm PT
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Tar,
prednisone, cyclosporine and rituxan all have serious side effects. Would only try them as a last resort, and only if an autoimmune cause is suspected (if any or some of the antibodies I listed were positive).
you beat me to the questions about vision and throat related to myasthenia.
Wish I could be of help, I am in adequate in this area.
Go to the BEST rheumatologist in Denver (probably at the university of Colorado med center), if you decide to go that route. Get references etc.
Best
-e
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healyje
Trad climber
Portland, Oregon
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Feb 19, 2009 - 09:32pm PT
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Tar,
Can you double check all your blood work and see what if any antibody testing was done. I'd really throw in with getting a full go at the antibodies with an ace rheumatologist. As mentioned, a good one of those folks are used to working in the grey areas with the understanding there can be many, many different manifestations of autoimmune problems - a clearcut diagnosis is often the exception rather than the rule in their world.
Maybe post up on MP looking for one or again, give Kenny Duncan a shout up and Ft. Collins, he might know a good one as well. And Ezra's suggestion to nose around the UC Department of Rheumatology is a great one as well (I'd kick in for a visit to them as well as for your JT event...)
EDIT: Looks like they have both a great [url="http://www.uchsc.edu/rheum/" target="new"]Division of Rheumatology[/url] and a [url="http://www.uchsc.edu/sm/deptmed/clinimm/" target="new"]Division of Allergy and Clinical Immunology[/url].
One of their docs, David H. Collier, was Denver Mile-High Magazine's Top Doctor in Rheumatology as voted by physicians in Denver metropolitan area 2008. I just shot him an email roughly [anonymously and briefly] outlining the situation and asking him who he felt would be the person around there to see (if not him) if you did decide to take another stab at it all...
David H. Collier
Denver Health, University
777 Bannock St.
Denver 80204
303-436-6907
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Tarbuster
climber
right here, right now
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Feb 19, 2009 - 09:37pm PT
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I am much appreciating all of you putting your heads into this matter.
For the moment however, this thread needs pictures!
These from climbing 2004 photo annual, by Dean Fidelman:
(it might be some of these photos will show up April 25)
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