Couda Equina Symptoms - MRI clear

[CreativeKitty]

i have been referred to and still awaiting an appointment at an NHS pain clinic which is a centre specialising in CRPS. Not expecting an appointment until 3rd week in February after a 30 week wait. I have classic symptoms in my right foot and up to mid calf, I’m also on awaiting list for a hip replacement on my right side.

Over the course of last weekend the numbness and pins and needles that had developed in both feet and hands 4 weeks ago, had reached up to my knees, my legs had become weak, I’d had 3 falls and i had a loss of sensation when going to the loo. My OT visited on Monday to bring me a wheeled walking frame and insisted I phone the GP who sent me to A&E with suspected Couda Equina Syndrome. After a 9 hour wait before seeing a doctor after midnight, I was sent home to return the following morning. The following day the “urgent “ MRI came back clear which was a huge relief however the doctor didn’t have a clue as to what is causing the very painful and debilitating symptoms. She indicated that it may be/be linked to my yet to be formally diagnosed CRPS.

My GP, prior to this episode had taken bloods, results came back clear and referred me for another nerve conduction study, I’m still awaiting an appointment.

Does anyone with experience of CRPS or the symptoms i describe, have any ideas or suggestions which I can try?

Many thanks

[PainConcernHelpline Moderator Community Champion Pain Concern]

Dear CreativeKitty

I am a forum moderator at pain Concern and have just been reading your post.

At Pain Concern we have several resources that specifically deal with CRPS, I have included the links below.

painconcern.org.uk/product/...

If you follow this first link it will take you to a leaflet that discusses CRPS, but also on the same page you will find links to some useful websites that have more information on CRPS.

painconcern.org.uk/airing-p...

painconcern.org.uk/airing-p...

painconcern.org.uk/airing-p...

The three links above are to Pain Concerns podcasts - Airing Pain, they are really informative and make for interesting listening.

It's really hard having to endure such long waits to access pain clinics, in the meantime I hope these resources will be of some help to you.

Best wishes

Pain Concern

[CreativeKitty in reply to PainConcernHelpline]

Well I ended up in hospital after a fall at home. I’d done some research and come across Guillain-Barre Syndrome and insisted that I needed to see a neurologist and not be sent home. All the Emergency Department were interested in was that I’d not sustained any injury in the fall.

After nerve conduction study and lumbar puncture it was confirmed that I did indeed have Guillain-Barre Syndrome (GBS). After a 5 day course of intravenous immunoglobulin and minimal physiotherapy input I was discharged home. A long and uncertain recovery period ahead but at least I have a diagnosis.

Would just love to see the doctor in ED who totally dismissed my suggestion that I had GBS and reluctantly admitted me when I said I hoped he could live with his conscience discharging a person with no feeling in feet/legs/hands and who lives alone!