LOL Mary, Your a "Hoot" ha! ha! Ha! what is your fav. chocolate. Pure genius, you are... Pure geniue! I would never have thought of this one.. ok calling now.. Love, Desi

Hi Desi.

When you first posted this I knew I was going to reply; but I tire so easily I was thankful I had lots of time to write this.

I have been here at NT since November, 2006, and before that I had been at BrainTalk for about ten years; I've read lots of posts over the past decade, and yours isn't the first to show how much you hope that Stanton-Hicks' Clevelend Clinic (or for others, doc Schwartzmann) would be able to do what no one else can: Help you.

I have yet to read a post from anyone who reported waiting all that time to see these RSD gurus, and said they actually helped them. Yeah, a couple of people here talk about doc S and ketamine, but you don't have to see one of these guys to get ketamine. You can get it sooner, and cheaper, by seeing someone else who sells ketamine therapy.

And I didn't keep count, but I know that most people who have tried ketamine and then posted here, have said that it didn't help them. It isn't a cure, its just the most powerful and longest lasting anesthetic available; and that isn't good enough to help most of the people who've tried it.

The main reason I'm posting, however, is the experience of someone at BT, who we didn't get to know very well because she killed herself after hoping the Cleveland Clinic would actually be able to help her.

They treated her badly; the jerk doc she saw told her she was "too young" for opiates. What the Hell does that mean? If you have severe pain and opiates will help, you are not "too young". But that's what this asshole told her just before she took her life.

I don't think you will go there, learn they can't help you either (they don't really help anyone), and you will then go home and kill yourself. I do think, however, that you're expecting more than they can deliver, and so I'm writing to warn you against getting your hopes too high.

Someone else posted that while they were waiting their symptoms spread to other parts of their bodies; the implication being that if they had been seen sooner, that might not have happened. Well, the truth is that no one -- not S-H, not doc S, not anyone -- has a clue about why sypmtoms spread and none of them know how to stop it.

If you go to the Cleveland Clinic and tell them your symptoms are spreading, they won't be able to do anything to stop it.

They know how to do sympathetic blocks, and in my ten plus years at these forums I have seen countless posts telling newbies that sympathetic blocks can stop symptom migration; but they can't.

Nearly everyone here has had blocks, and just about all have seen their symptoms spread. I recall seeing one person who reported that blocks actually stopped their symtoms from spreading. Just one.

Telling newbies to get blocks to prevent symptom migration is an urban myth. We used to call this advice "old wive's tales". They don't stop it, but everyone wants to believe they do, and; "If I had only gotten blocks soon enough, I wouldn't be this bad".

Someday I may write a post on what is scientifically known about how symptoms blocks work, but not in the near future; there are other facts about RSD I need to write about. Meanwhile, I will tell you (and everyone else) that researchers have demonstrated that blocks prevent normal SNS functions. They stop the SNS from telling the adrenal glands to release adrenaline. How do I know that?

Researchers have taken patients right after a block and injected norepinephrine (adrenaline) below the site of the block, and in every single instance, all of the pain relief from the blocks vanished. Obviously, adrenaline has a lot to do with RSD, but there is no evidence that blocks prevent abnormal release of adrenaline; apparently, normal amounts of adrenaline are more than enough to cause our pain.

So, ketamine won't fix you; it might relieve the pain for a while, but it doesn't work for most people and it doesn't keep working for those it does help. Blocks can relieve pain, and that makes them useful, but they won't stop symptom migration.

S-H and doc S have amazing reputations. Truly amazing reputations, considering the fact that neither one of them has ever really helped an RSd patient recover from this disease.

All I'm saying is please don't expect S-H or his people to help you in any meaningful way. They can't. If they knew how to really help RSD people, I'd be waiting in line to see them, and other doctors would be copying what they do.

If you've read some of my others posts, you know that I don't carry a message of hopelessness: Right now, I may really be the only person in the world who knows what RSD really is, but the "experts" can't hide the truth forever.

Anyway, I'm not the only one; I've read journal abstracts from two physicians who suggest that RSD might really be an ischemia-reperfusion injury (IRI). There will be more articles like this from more doctors, and someday all this "nerve damage" nonsense will finally be filed where it belongs.

Speaking of "nerve damage" nonsense, I'm just about finished editing a post on that subject. It will explain why nerves can't do what the "experts" say they do in RSD. It will also explain why so many apparently sane doctors buy into this "nerve damage" nonsense.

There is hope, my friend. You just won't find any at the Cleveland Clinic. (If they offer you blocks, however, go for it. Anything that relieves the pain that well, even for just a little while, is worth trying)...Vic

Hi Desi,

Just to follow up on Vic's post, here is a previous thread we had about this, you might want to take a look:
http://neurotalk.psychcentral.com/sh...ad.php?t=14988

It might help to put in a search for "Cleveland Clinic" on the forum (use advanced search, you can specify the RSD forum, and "posts") to see other people's experiences of the clinic,

all the best

Hi Vic, Hi Artist(Pat) ok.. here is my story.. kind of long. When I was in the hospital (I had a "C" section 29 yrs. ago for my oldest, youngest son too.) Ok, the nurse who put my I.V. in my right hand kept missing the vein.. like 4 times. I was in so much pain! My husband started swearing at her! ok.. when she finally got it in, gave me morphine after my baby was born(through my I.V.) my hand started swelling, felt like someone was sticking steak knoves in my hand. It blew up 3 times it's size! turned red, purple. I buzzed the nurse and she said "what is it;"Diane"?? (I go by the name, Desi) on the board. ok.. anyway, she took one look at my hand, ran out the door, here comes 2 doctors, two nurses(one being the one who put the I.V. in me) the one Dr. cussed her out! ok.. the Doc. put my I.V. in my left hand.. nice and swift .. no pain. He said how sorry he was. ok.. I go home after a week, my hand puffed up again, swelling pain. I go to the pain management center. get a block (Ganglion) pain done.. ok.. yrs latter (I am a pitcher) I played regular baseball, no underhanded baseball for me) LOL ok, anyway, as I jumped to catch the ball, I twisted my ankle and went to the E.R. my ankle was not broken.sent me home in a open shoe with ace bandage on. ok.. pain was so bad.. went to the ER again. here they sent me to a "Pain Management center' I loved that guy!!! wish he was still at that hospital(the hospital is now turned into office space) I had the pain for at least 8 months. Now, back to this time and age.. I had severe wrist, swelling, pain yada.. yada.. Was seen by a neurologist, my family Doctor, surgeon(who did the CT surgery) and the "***" pain Doctor. He is one arrogent son of a @$#&! He did three ganglion nerve neck blocks, they never worked.. he bothched two of them!! the "Jerk" I don't see "THE PUNK anymore.. LOL I mean 'cmon, the dudes a pain management Doc. and he wants me to go to Clev. to see another pain management Dr. what does this tell you?? well, it tells me he wants me out of his hair.. "Since I called him on his mistaken botched blocks"!


Alright, end of my story. Now, here is what is bugging the heck out of me. after my surgeon said I had RSD he ordered a Cat scan, MRI, bone scan, MRI scan and plain ex-rays.. here is what showed up I have "Atrophy,' that I should not have since I am 52. He said I only have a little bit of this, and I shouldn not have any, since this usually happens to people in latter years! He also found out I have a herniated disk in my neck (Cervical spine) ok.. now about my wrist...the bone scan showed "uptake irritation". I am not going to see a pain Dr. up in Clev. too scared now what vic and pat wrote and sent me(thanks Pat) -Artist! Now, my surgeon thinks that my shoulder pain(oh, he also said I have tendinitis in my right shoulder.) I am so damn confused!!! he said the herniated disk(getting back on track here).. may be causing my arm, wrist, hand pain??) I mean, 'cmon, man.. make up your mind!!! Do I Have RSD?? yes, my right hand is swollen, turns red,is cold as ice! painful.. yada.. yada.. The pain does go down my arm. now.. here is the "FAVOR" the surgeon is doing for me..I go and see a specialist that deals only for wrist and hand pain June 21st. next, on July 11th. I go to a orthopetic specialist for my spine and neck. Guys, I am so very, very confused here!! Vic, why did you bring up ketamine cream?? I wouldn't use that, if you payed me! LOL Well, that is my story.. can anyone explain this? I think I am almost blind to all this mess. thank you all, your the best. Love, Desi (Diane)

Hi Desi,

I don't live in the US and have no personal experience of any medical treatment there, so please understand I'm not trying to influence you, I just thought you should be aware of other people's experiences of the CC that have been posted here, I'm sure there are a load of people who have had OK treatment there.

BTW, Artist will do very nicely, thank you, lol, I prefer my username on the board....

But your doctors are very probably right in what they're telling you.

I have a similar situation to you in that I have 4 conditions that cause neuropathic pain. I have spinal stenosis, cervical spondylosis C4-C6, RSI and RSD (and on top of that I have painful arthritis, rather badly in my fingers, and patchy osteoporosis).

They all affect my arms and boy, are my arms being affected quite a lot, it's got worse in the last 6 months.

The RSD is very specifically, in my case, confined to the left wrist and hand and is mild/moderate; the pain is a bit different (bone deep and whining) but the *really* big difference is that the RSD pain never stops, never lets up, it's 24/7.

The pain from RSI (severe widespread nerve stinging) and my neck problems (sickening, dull, tiring) can be considerably worse than the RSD pain during the day, but is always a lot better after a night's sleep, or rest. I take a half a zopiclone (ambien in the US, I think) at night, which does the trick.

I have severe pins and needles, a kind of overall "fizzy" pain in both arms, and my arms can fall asleep during sleep, to the point where when I wake up one of them just isn't there. It's simply vanished from my consciousness completely, no messages getting through of any kind.

I go to the HK government clinic, which operates very like the UK National Health service. It's very good, very cheap, but very slow. Because I've got 5 different pain-causing things, they've shuffled me between departments, from ortho (because I got RSD after an arm break) to neuro (briefly) then after they finally did an MRI and saw my poor old neck bones and spinal cord, to the Spine people.

The spine people seemed really disappointed that I hadn't visibly deteriorated whenever I saw them, so they have now passed me on to the rheumatologists. Not for the RSD, but for the RSI and arthritis. I have my first appointment with them on Thursday, I can't wait .

The only thing they do, all of them, is to prescribe Neurontin. Which is good, because it does help, but none of them seem to have any answers to anything.

I suppose I'm lucky in one way, in that I got RSD before the other things (excepting arthritis) became noticeable, so I'm sure about the origin of that painful area. Arthritis (burning joint pain) is easy to spot, it deforms me as it worsens, gnarley fingers. RSI just started this year and is OK if I don't use my right hand (ha ha!) but rapidly worsens with use.The rest...well, I just say "neck stuff" - not to diminish it, it causes things far worse than arm neuropathy further down the line, but because I'm a Bear of Very Little Brain and I can only deal with sooo much.. and what's hurting *right now* this minute.

So! Your doctors really are probably quite right about you, though whether they can do much for you ....well, I hope you have better luck than I'm having.

I'm just a couple of years (or so) older than you, but I reckon it's all downhill after 50. Friend of mine, she's 69, said to me the other day, "You know what's good about getting old?" I said "No, what?" she said, "Nothing!"

Just about sums it up, really...

Ha! Bet that's cheered you up

all the best!

Ya had me cracking up over this way "Artist" oh, alright I will use your name that ya want me to use! LOL Anyway, Lady you have a lot going on with yourself! wow.. no feeling at all in your arm?? that has got to be scary. growing old is not for sissy's(That's my motto.. LOL) anyway, wishing you the best of luck on Thursday, Artist. take care my friend! Love ya! Desi oh, here are some "gentle hugs"

Yes, yes. it is, very. Absolutely dead as a doorpost. First time it happened I was SO frightened, thought I'd become paralysed in my sleep and had to try to move it using my other arm. Which is in itself scary, because although you could move someone else's arm for them, you do that from the "outside".

Trying to do it from the "inside" is weird, you don't know which way to bend anything and you're worried that you'll break something. It's a situation I've simply never encountered before, surprised the hell out of me! It's only happened a few times, so far. I now get up and let it hang there and gently shake it by my upper arm till feeling returns which takes 5 - 10 minutes.

I'm very careful now about how I position myself before sleeping....ye gods, these things are so tedious!

Hey, you cracked me up, with the "growing old is not for sissy's" - if you weren't on our forum I'd steal that and use it as my sig!!

all the best

Go on ahead, Artist and use that;"Growing old is not for sissy's".. I'm not using that! LOL Anyway, back to your arm.. hmmmmmmmmm.. The very first ganglion nerve block I had done.. I actually know (well, don't really.. know, know!) Anyway, when she did my block(PMD) oh... 29 yrs. ago she completely numbed my entire right arm. I too had to use my left arm to move my right arm over. It was so very, very scarry!! damn, it lasted 20 or more hours. I can't begin to imagine it every day!!! sorry to hear this.. you take care, my friend! Love, Desi