The nightmare unveils to be worse than imaginable
 

Its been awhile since i have been on here. I am in on track for the Ketamine Treatment i have one last test this monday to go through and than i go for it. Problem is my RSD has decided to attack something crucial to human life...My lungs.
I am 18 almost 19 and for those that remember my post way back, i have had RSD External & Internal for going almost 6years now.
2003-Left Foot
2006-Knees,Wrist & Hands, & complete chest wall
2007-Nerves directly around the heart, & stomach/intestines.
2008-Both eyes
2009- Both lungs.

My question is i would like to speak with those experienced RSD fellow suffers that have rsd in their lungs. I know of alot of full body suffers but almost all full body suffers deal with external rsd all over. Those fitting my asking please contact me asap thank you very much.

Hi Lordwood,
 

I don't have RSD in my lungs but I was glad to see you post.

I know you remember me from our PM's and you brought a smile on my face to see you here. It's for a sad reason I know and I do want to say, I will keep you in my prayers that you do start getting better soon. You are too young to have to go through this and such a great guy.

Ada

Good to see you again! I'm full body but lungs are clear. I hate that you are being attacked by this vicious beast. I wish many times I could do something to help the ones like you, being ravaged inside and out far too fast. I hope the treatment comes very soon as it seems there's not a minute to waste. I'll keep you in my thoughts and wait for updates. :) I have 2 kids your age...a son who's 18 in 2 months and a daughter who's 19. It tears me up to see the young ones like you in here. There's always the chance my own children could get rsd since nerve disorders run in my family.

Hugs,

Karen

Hi Lori, respectfully, for all of us newbies, can you provide a chronology for us?

It really helps me to look into the future...
Thanks!

I left a chronological order,*edit*

I am sorry I asked. I will refrain from seeking advice from anyone who has had this condition longer than I

bumping the original post ... with request in bold.

Check your PM fellow.;)

No one at all out there?!? :(

This may be helpful, I don't know. About 4 years after developing CRPS, I was being worked up for what turned out to be an undiagnosed non-transmural MI (I had apparently presented a false negative on a thallium stress test a few months earlier, and had a normal EKG when they took me to the ER with severe chest pains in the middle of the night, so anything "cardiac" was ruled out, even though it later turned out that my mid LAD was fully occluded and I survived only due to "good collateral blood flow.") Anyhow, along the way, I was worked up by a pulmunologist who ordered periodic CT studies of my lungs, and about three months into the exercise we found a "ground glass formation," and subsequent CTs found it to be spreading. At that point, I went to the Mayo Clinic in Rochester MN (they also have one in Jacksonville) where they were able to biopsy the lung tissue with a *bronchoscopy - the idiots in LA insisting that it could only be done via surgery through the chest wall notwithstanding the fact that the Mayo Clinic has been doing it this way for 30+ years - and came back with a diagnosis of sarcoidosis.

Now, my internist in LA, who's a very smart fellow, told me that I had to think of my CRPS, sarcoidosis and "Monoclonal Gammopathy of Uncertain Significance [MGUS]" as manifestations of one underlying disorder. And I'm still looking for the genius that can do that. But in the meantime, a great sarcoidosis specialist at USC has followed me, and we have seen the sarcoidosis go into spontaneous remission. (As it does most often in white males, were I an Afro-American female, it could of been a death sentence.)

Bottom line: have you been seen by a really good pulmonologist who has confirmed that you have RSD in your lungs? I would think that they would want to with a biopsy utilizing a bronchoscopy, which is a relatively non-invasive procedure, done under only mild sedation. The pathologist could then confirm that it was in fact CRPS by looking for evidence of focal small-fiber axonal degeneration. See, "Evidence of focal small-fiber axonal degeneration in complex regional pain syndrome-I (reflex sympathetic dystrophy)," Oaklander AL, Rissmiller JG, Gelman LB, Zheng L, Chang Y, Gott R
Pain 2006; 120: 235-243. [Free full text at http://www.rsds.org/2/library/articl..._pain_2006.pdf ]

The reason I suggest this, is because if a biopsy shows that it's NOT RSD/CRPS, then other treatment options, including steroids, may be available.

Good luck,
Mike

*fluoroscopy assisted