Update on John radcliffe appointment

[Waterbottle]

Good morning everyone

Sorry I haven't been In touch sooner. I went to the John Radcliffe on Wednesday to see professor Angus. I will start this with an unbelievable event that happened once I had checked in for my appointment.

I checked in at reception after a dreadful journey from Northamptonshire took over 2.5 hours. I sat waiting and after 1 hour a notice went up saying the clinic is running late. Then the receptionist came over and asked me to confirm my name DOB and address? Then asked me to come back over to reception, there was a lady stood their with the same name and DOB as me and had also had a letter with the same appointment time? She said she didn't know why she was here but attended anyway and had driven for several hours to attend? It turns out that because we have the same information they sent her my letter with my private details on in error and sent her home? What a cock up and worried me that this couldn't happen as my private information was in her letter.

But after another hour I was called in to see Proffesor Angus and what a wonderful man he was, he spoke to me about my symptoms and the. Said I had CFS Chronic Fatigue Syndrome in his opinion rather than fibromaglia although he said the appointment I have in Novemeber at the pain clinic could also help me.

The treatment is CBT and an assessment at a hospital in Oxford for physio but there is a waiting list for several months. He also told me some of the medication like pregabiln and tramadol can make the CFS worse and he would write to my GP to see if that can be changed for something else?

My right leg drags and the left leg is week and I use two walking sticks and often can't walk without the support of my husband because of pain in my legs and weakness? He said I need to get an OT assessment at home to help me, but he had no explanation for this cause other than the CFS can effect the way your brain effects your limbs?

This was my day out xxxx

[Ginsing]

HI Ignoring the mess up with the appointments it sounds as if your day was good. Meeting the MAN (I love that) has helped you and that is good.

Lots of luck with everything

x Ginsing

[Regnofibro1]

Oh wow I am so sorry to hear all of that it must have been very hard on you! I truly hope that they can find out what's wrong and get you the help you need! I wish I could be there to give you a very gentle hug! It sounds like you have had a very ruff time of it. Wishing you all the best. Hugs

[rosewine]

So glad after that traumatic experience you actually got to see someone who has taken all this seriously and hopefully with his guidance and the guidance of the Pain Clinic you can get some meds and alternative help that will help you. Hope the OT assessment will help as well.

I had a similar experience to you some years back. I was due to have a hormone implant in my thigh under general aneasthetic after a hysterectomy in my early 30's. I had been to see the specialist who had confirmed that I needed another implant and said i would hear from him within two weeks and I didn't. Contacted them and was told an appt had been sent out still no letter, went down the doctors who rang and they said the same thing. Well this went on for weeks so I went down again and said still no appt and by this time I had full menapaulsal symptoms with a vengence. After being very persistant and being more or less called a liar it was found that he had a lady same name, same DOB, same problem who lived in a town near to mine and they had been sending the appt letters to her not me. Only when she got the third one did she bother to contact them and then they put 2 and 2 together. Scarey isn't it.x

[Waterbottle in reply to rosewine]

Yes that is awful. And with the data protection we are all told we have?

I hope your keeping well today and thank you so much for replying xx

[TheAuthor]

Well, at the end of the day it sounds quite positive and it is wonderful to get a really good doctor. I want to genuinely wish you all the best of luck.

All my hopes and dreams for you

Ken