UK RSD sufferers please help correct this.
 

My MP has just forwarded an e-mail from Professor McCabe in which she states the average time for diagnosis is 6 months, I know this is wrong. In the US it's 30 months and 8 doctors. Please list times and no of doctors, physios before you were diagnosed and ask as many other people you know to do the same

Just curious where you are getting your US figures?

Hi Kev

I was lucky. The surgeon identified the problem the day the cast was removed. I met with a physiotherapist the same day and have had regular physiotherapy since. I was given the official diagnosis about a month after the cast was removed. So, it was only one doctor - the surgeon who preformed the surgery which was the precipitating event.

KimA

Mine was one doctor too. After my knee op, I saw the surgeon for the follow up, and he was surprised at how much pain, swelling and stiffness I still had. He hoped it would improve. I saw him again 6 weeks later, and by then had the colour and temp changes going on. I vividly remember him putting his hand on my knee, frowning, putting his other hand on my good knee, and frowning as he compared the two. Luckily that day my knee chose to give a small demonstration of the colour thang :rolleyes: and he saw it clearly. He as ked me some pertinent questions and said 'I think you have something called CRPS' and explained it a bit. He referred me to a pain specialist that day and wrote to my GP.

Goodness knows what happened in the op, but I can't complain about his diagnosis and prompt action.

Mine was 2 months from op to CRPS diagnosis. One hydrotherapy physio, and one surgeon who diagnosed it.

Bram.

Zook it was a survey I found on Professor Howard Blacks site a couple of years back. Brambledog nothing has to go wrong for RSD to occur.

For me it was about 9 different doctors.....neurosurgeons, cardiologists, Primary doctors, and pain doctors. It took about 3 and a half years before a vascular surgeon sat me down with the cold hard truth.

He told me "they" knew all along that it was RSD, but nobody wanted to be the one to tell me. There was not a cure, and it was caused by the femoral artery being blocked for 7 days, and he called it reperfusion injury. Where the blood had been blocked and festered in the leg, and then they fixed it, and let the blood flow back into the leg pushing the nasty blood into my brain causing damage.

Plus the ischemia in the leg was severe and was not curable. He said it should have never happened, and they should have treated it right away....because they knew it was going to cause this damage and RSD. If they would have started treatment that very day....it would not have been as bad as it is.:Bawling:

Then a few months later I had a neurosurgeon sit me down, and asked for my cane. He held it up and told me this is what he expected my leg to look like when I walked in after not seeing me for about a year. He told me...I dont know what you are doing.....but never stop! If you do.....it wont be long and your leg will look like this cane!.:eek:

I have pushed the pain limits ever since!

Mine was suspected by my PT when I was doing post surgery therapy.

Diagnosed by 1 doctor and confirmed by my neurologist. Completely missed by my hand surgeon.

I know that Kev, I suppose I just meant that you zonk off as one person...and wake up with CRPS.

Brambledog that was in reply to Zooksters question

I had my accident in late November and was not diagnosed until late March.

Before being diagnosed I was seen by 4 different GPs, two specialists in the field of trauma and the team who operated on me, none of them mentioned CRPS to me or wrote it on my medical notes. Many of the symptoms were clearly visible at these times.

I was only diagnosed correctly after my last GP thought my foot had been set wrong in the operation as my leg was not straight. My third trauma specialist diagnosed it after xraying my foot and realising what was wrong with me.

Doctors in my view are often pretty useless and those should think about a new profession.

I was having a conversation about my problems with one GP and he was looking up things on his laptop. So I thought for me, it came out he was booking a flight!

At least three of my recent GP's had never heard of CMT aka Charcot Marie Tooth disease which my wife suffers with.

I am still in search of a GP that knows what he/she is doing when it comes to our two diseases, it might take a while I think.

John.

I'm in the UK. Developed RSD when I was 12 years old and it took me 4 months to get diagnosed but around 5 drs (not including physio's) and 3 hospitals.

I was told by Physiotherapists that 'the pain couldn't possibly be that bad', despite my foot being severely rotated, swollen and blue. They had never seen RSD (like many other health professionals) and had no clue what was going on, hence why mum and I sought help from another hospital.

I do however consider myself to be quite 'lucky' that I got a diagnosis quite quickly. It felt like a lifetime and didn't make any difference to recovery (I still have RSD - it isn't in remission) but I know that its quite quick compared to some peoples, I don't know how people cope for many months/years without answers. :eek:

docs and years....
 

My orthopedic dr suspected rsd, then sent me to a pm dr who confirmed it and then I got a second opinion from a neurologist who confirmed it too. This was all within a six month period. I was lucky about it being diagnosed early at least, but it's still been a very painful experience.

My partner has CRPS that started seemingly without an injury (at least one significant enough to notice). She saw 3 GPs at her local surgery who were not convinced that her pain was genuine or at the level she was reporting and refused to refer her to anyone.

However, i was due to see a rheumatologist a couple months later and took her along. That consultant recognised her symptoms quickly, and was very keen that the situation was investigated right away. They had a pain clinic colleague and an OT come take a look at her within 30 minutes or so.

So a relatively fast diagnosis at 3 months, although the management of her condition over the following 9 years has been sporadic, poor and uncoordinated. In my opinion it seems to be a lucky dip as to when you get to meet a medical professional with prior experience of this illness or the capacity to spot it. Awareness of CRPS among GPs in particular in the UK seems to be really low, at least in my neck of the woods. (South west UK). I have often sat with my partner in GP appointments and had to explain it to them, or watch as they google it. Her current GP is simply amazing but took a long time to find :)