Alisons mum here
Shes asked me to post a new topic about something thats concerning us both at the moment
Alisons had RSD for just over 4 years and more recently been diagnosed with scheuremanns (disc problems)
She has really bad pain in her back which is likely to be a spread of the RSD
Recently her back above the bra line has been numb, whereas below it has been hypersensitive. These were small areas so although a concern, the numbness was more annoying than anything else
Since monday, however, her left leg (RSD leg) has gone numb from and area about 6" above the knee all the way down
The strange thing is that although it is numb, she still has all the old RSD pain is there too so the numbness is just an added complication
Alison can pinch her leg, hit it, pull hairs, stick a pin in, you name it and she feels nothing
Because the leg is numb Alison has very little sense of where exactly it is in relation to the floor
On even surfaces this isnt so bad because she can look at her other leg to judge things but on stairs and slopes it is more problematic
Often she will think her foot is touching the floor when it is really a couple of inches above it and then she will try taking a step forward and stumble or fall
We are making sure someone is around for safety on stairs etc and ensuring she uses escalators and elevators wherever possible but obviously we would like to understand a bit more about what is going off
I emailed our PM and nurse on Tuesday - they are checking things with the neuros but so far havent got back to us
I am wondering if this is an RSD thing, a problem with the Scheremanns pinching a nerve in the back, the RSD swelling in the back pinching nerves (although the swelling isnt too bad at the moment) or something completely different
If anyone has any ideas or has experienced something similar I would be grateful to hear from you
Many thanks
Andrea (mum) xxxx

I'm so sorry to hear that Ali is going thru such hard times. I will keep her in my thoughts and prayers.
I would definitly run medical tests on this issue but I can tell you that I have had numbness in my right toes. I couldn't feel them or move them and the cause was the rsd but I was medically tested to rule out other possibilities. After months of intensive physical therapy I was able to regain the movement and the feeling in the toes.
The rsd pain in the limb while it is numb does sound possible as it reminds me of the phantom limb pain experience as even though the limb is gone the person still feels as if the limb is still there.
I wish I could offer more help as my heart goes out to you and Ali.

Xoxoxo
Sarah

Just to update you, we are still waiting for our PM / neurologist to come back to us with a possible explanation
ERs locally do not really understand CRPS but we cannot get to see another hospital until Alison turns 18 in two years