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Tarbuster
climber
right here, right now
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Feb 19, 2009 - 09:49pm PT
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Thanks for the detail there Joseph.
And again I much appreciate the rigor on your part.
At the direct recommendation of my neurologist, after we looked at the latest nerve conduction studies, a vascular surgeon was what was recommended over a rheumatologist; and thought of as an outside guess to boot.
In fact I had two neurologists looking into the matter and both said so.
Given that my internist does have a special focus in metabolic issues, has patients with myasthenia gravis, a wide variety of intractable conditions and so forth ... and also that my neurologist heavily reviewed that material, it was agreed that the rheumatology angle had been well covered and would not be the next step.
Nevertheless, your point is well taken.
Get one by name and get a good one.
And thanks for your pledge to help with it too; I'll take you up on it.
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healyje
Trad climber
Portland, Oregon
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Feb 19, 2009 - 10:22pm PT
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Tar,
You have to go with your instinct and with striated muscles I can understand why they'd say go vascular (resources in/waste out) after ruling out the metabolism, mechanical and neurological. But I'd probably part company with them on the idea that the Endocrinologists covered the rheumatology adequately in such a unique case. Personally, I'd want the Rheumatologists to rule out rheumatology before moving on to the vascular guys. And given the body of case history you have, I would think a rheumatologist would only have to review your files, order another panel of blood work, and then they'd be in a fair position to give you a some idea if that's an area of concern.
I'm good with whatever you decide, but I just can't stand the idea of you knott climbing - it's way too close to my own shoulder issues...
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SteveW
Trad climber
The state of confusion
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Feb 19, 2009 - 10:35pm PT
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Well shucky darn--finally, a picture of Tarbuster his self!
Whopee!
We need more of those, Roy!!!!
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Tarbuster
climber
right here, right now
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Feb 19, 2009 - 10:45pm PT
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I follow that strategic logic Joseph.
(And the heartfelt part too)
Here's the latest blood work I have and I'm just not seeing specific antibody work-up as indicated by Ezra.
I've got more let's start here:
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pip the dog
Mountain climber
the outer bitterroots
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Feb 19, 2009 - 10:48pm PT
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i haven’t yet met you, but surely know of you. imagine how floored i was that when i begged for help (i’m new to this venue) -- that the 3rd person to respond and truly help me out was... you.
that was oh so huge to me, especially as i wondered if this was 'a safe place for dogs'.
~~~
my sweetie had all manner of oddball symptoms, a few not unlike yours (a few). and the local heroes simply could not figure it out and blew us off in all manner of easy and useless diagnoses. in the end, she went to johns hopkins and found someone with the talent to actually figure it out for her (in her case, the earliest stages of MS).
having since read everything i can find on her condition, some variant of an autoimmune disease is screaming in my head -- but i have no special insights into this, or anything medical. i guess if you spend hours reading about nothing but hammers, everything quick comes to look like a nail.
perhaps the one thing our (my sweetie and i) experience can offer you, is to seek out the very best university med school teaching hospital you can find and go there. for there you will find people who are actually paid and actually given the time to do the reading and research to be on top of the state of the art in the art of their small piece of current medicine. most mds’ want this -- but few have opportunity to actually do it.
my sweetie (right here at my left shoulder) recommends hopkins (baltimore) and brigham and women's (boston).
~~~
all good things, mighty one. know that you are in our thoughts (and as a team we know intimately the frustration of not getting a useful diagnosis on the first 15 or 30 tries).
hang in there dude -- be as active an advocate for your own best possible care as you were an advocate for me and so many other souls in this venue.
i hope to make it to j-tree for the gig. i suspect i might. rest up so you can give me a much deserved dhope-slap for all of my endless verbosity -- such as on this post… dhope!
^,,^
(or michael, or pip, or dogboy, or ‘you moron noobie’ – pick one, i answer to all of them)
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Tarbuster
climber
right here, right now
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Feb 19, 2009 - 10:51pm PT
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Thank you Pip,
that's good stuff.
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john hansen
climber
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Feb 19, 2009 - 10:57pm PT
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Roy, with all due respect and tounge firmly in cheek...
And with Russ's post in mind these are my top 10 ideas to find work with "no hands required" ...
1) In a "River Dance" Troop.
2) Soccer Coach
3) Ass Kicker
4) Grape crusher
5) Uni-cyclest
6) Roach exterminator
7) Shoe Model
8) Sponsered Hacky Sack player
9) Foot pump operator. Or...
10 A Senator from South Dakota.
Tarbuster, always have enjoyed your post's. Aloha
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Tarbuster
climber
right here, right now
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Feb 19, 2009 - 11:16pm PT
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I'm probably going to have to work two jobs.
So it looks like modeling shoes while on a unicycle...
Good job thinking out of the box.
Don't discount it!
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Todd Gordon
Trad climber
Joshua Tree, Cal
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Feb 19, 2009 - 11:20pm PT
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Dee Eee will be there;...it's party time....He is a big fan of the "Beadwagon.".....
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Ezra
Social climber
WA, NC, Idaho Falls
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Feb 19, 2009 - 11:27pm PT
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Tar,
A quick scan of your labs. The increased MCV can suggest B12/folate deficiency, Although you are not anemic. I can not give a qualified diagnosis over the internet, so don't take what I say as gospel and seek qualified medical advice.
The other major abnormality is the Increased IgE levels, can be seen primarily with allergies to any number of things or parasitic infection.
Tape worm infection can give B12 deficiency and increased MCV, although you don't have the increased eosionphils which goes with a parasitic infection.
Also anti intrinsic factor antibodies can give pernicious anemia and an increased MCV, but you obviously aren't anemic, so it doesn't fit for that.
I'm not seeing an obvious cause from the currently posted labs.
If you have done lots of foreign travel you might consider albendazol or derivative to kill any potential parasites, although the picture in no way fits for that, and it would be only as an extreme precautionary measure.
Seek qualified medical advice, as I am not (legal disclamer)
Best,
sigining out for the night and probably till 3pm tomorow,
going skiing!
-e
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healyje
Trad climber
Portland, Oregon
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Feb 20, 2009 - 03:13am PT
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Tar,
If nothing else, rheumatology seems like about the only folks who haven't had a slice of you yet - take all the relatively current blood work and your case history to Collier or another one and see what they say. God knows what the hell it is, it's sure oddball enough. I'd say that if nothing else you've cleared out wide swaths of possibilities - seems like rheumatology, parasitology, and the niches are what's left to follow through with at this point (to be honest I have a hard time believing it's vascular with it that localized and bilateral, but of course I'm in no way qualified either) - please don't give up quite yet! You can see from Ezra's comments that it's likely you need someone really capable of sleuthing through the chemistry telltales.
Outa of here myself, monitoring Peregrines tomorrow...
P.S. Please edit out those images for Name / Date of Birth / Phone / etc...
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eeyonkee
Trad climber
Golden, CO
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Feb 20, 2009 - 09:22am PT
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Good idea, Rick.
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Ezra
Social climber
WA, NC, Idaho Falls
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Feb 20, 2009 - 09:55am PT
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Healyj
Haven't totally excluded parasitic infection, there are encysted stages of parasites etc that won't give increased eos. Parasitic infection just seems unlikely.
Tar, folate deficiency can be seen in alcholics, or vegans; both to decreased oral intake of folate.
Best
-e
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Todd Gordon
Trad climber
Joshua Tree, Cal
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Feb 20, 2009 - 10:09am PT
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Dr. F is a thumbs up for Beadie.....
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Anastasia
climber
Not here
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Feb 20, 2009 - 01:43pm PT
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Bump!
Love ya',
AF
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nature
climber
Tucson, AZ
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Feb 20, 2009 - 01:47pm PT
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I just opened this thread. Not sure why I missed it.
I read calls for sushi to add to the party. Considering the reasons for this event I will give great consideration to making the journey with a trailer loaded with fish.
hmm....
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Bullwinkle
Boulder climber
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Feb 20, 2009 - 01:49pm PT
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Doug,
If you show up, Calendars for life. . .DF
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nature
climber
Tucson, AZ
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Feb 20, 2009 - 02:10pm PT
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It's a six hour drive. It's two months out.
The first sushifest was 4/20/07 - I met Roy at this event. IT's suppose to be an annual event. How am I suppose to knott do it at this point? And where else would I do it if I'm to commit?
Where am I setting up my sushi bar?
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Tarbuster
climber
right here, right now
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Feb 20, 2009 - 02:21pm PT
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Go nature GO!!!
(Keep in mind that we'll likely see 100- 200 people at this thing)
Joseph said:
seems like rheumatology, parasitology, and the niches are what's left to follow through with at this point
Ezra said:
Haven't totally excluded parasitic infection, there are encysted stages of parasites etc that won't give increased eos. Parasitic infection just seems unlikely.
Tar, folate deficiency can be seen in alcholics, or vegans; both to decreased oral intake of folate.
Here’s a special GI panel, (parasitology)
I’ve also got some other numbers to post so we can probably isolate folate and many other items.
(names removed from previous blood work: thanks for the heads up Joseph)
I hope you two had a nice time with the skiing 'n the birds respectively.
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Clint Cummins
Trad climber
SF Bay area, CA
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Feb 20, 2009 - 03:49pm PT
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Tapeworm - ouch. You should fix that, if you haven't already. Unless it's a false positive related to the other SIgA results at top.
(total hacker here, not an MD...)
I don't think it relates to the arm pain, though.
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