The uninformed patient.

Starburst

I've had a rough few months with my mobility; foot and ankle symptoms were progressing and I have been getting nerve pain. Yesterday afternoon, I was assessed by my specialist rheum physio alongside an orthopaedic foot and ankle specialist. The first thing they told me was that I have fairly significant joint damage. Now, we all knew this but they were very specific about which joints and to what extent. However, I was somewhat perplexed because I had MRI scans privately and they had no access to these. We looked at your x-rays, they told me. What x-rays? Oh the ones I had over a year ago and the results were never shared?! :roll: Not their fault, I hasten to add, the physio department is fabulous but the admin and communication at my local hospital is appalling.

It has been agreed that if I try new orthotics and specific exercises, I may be able to halt the progression. I could have been doing this over a year ago but I never knew! The damage has led to neuropathy in my lower legs which I also wonder if it could have been prevented. I've been given 6 months before I'm referred back to explore surgical options. I have a lot of hard work to do in order to get strong; I am loathe to even consider any sort of operation.

All that said, I still have no active RA, so every rubbish cloud has a silver lining!

Slosh

Don't quite now where to begin Starburst, what a mixed bag of news. Good news that there are options to explore in terms of orthotics and exercise, but as you say frustrating to think this could have been explored a year ago. You say you had private MRIs are you able to get a copy of these? I woukd have thought that if you paid you woukd get this, I have a copy of the one my GP sent me for. I know exactly what you mean about wanting to avoid surgery. I can also empathise over the exercises, my lovely physio has already told me that the new ones I have for my leg, along with my arm and shoulder ones will be frustrating and tiring as I am trying to retrain my brain and get it to do things it doesn't want to do. Still I know how much perseverance and determination you have so I am sure you will stick with it.

stickywicket

We know it's the nature of the beast that things get worse over time but, to find out that they possibly need not have got quite so much worse so quickly must be rather galling. I suppose, logically, there's no reason why your privately taken MRIs should have been shared with your NHS rheumatology team but surely you, at least, had some rights over them. Having said that, hindsight is a wonderful thing.

I presume the damage that can be slowed is that which RA causes to ligaments et al rather than bone. As I understand it, once it reaches bone it is virtually the same as OA but a faster process. I hope the exercises will help. I remember being a tad disappointed after my first TKR when I found my leg still wasn't straight. No ligaments left :roll: They are worth preserving if possible and I know you'll do your utmost.

Starburst

The MRI scans weren't shared with physio, although the rheum clinic has them. I'm ok with this though because the consultant I saw privately went through the results with me. These x-rays were taken at the same hospital (NHS) and they are all part of one multi-disciplinary team, so I do feel that someone over the last year could have told me. #

Yes, they were talking about slowing down the ligament and tendon problems as well as building up some strength. Despite being tired, I went to the gym and for a walk, did my exercises and all with the orthotics in my shoes. Normally, it takes some time for me to wrap my head around this sort of thing but I am quite motivated at the moment, so I went for it!

I've agreed to try a low dose of amitriptyline to manage the nerve pain. I once had a horrific reaction but they feel the dose was too high, so I cautiously agreed to try again.

Sorry, a bit whiney, I'm afraid. I'm feeling a little out of sorts, not helped by driving into a width restriction on Friday and smashing my wing mirror. :roll:

stickywicket

I know some on here get copied in for all reports, Sophie. Might that be a solution for the future?

Well done for cracking on with the exercise. i hope it does what it says on the tin but please don't go at it hell for leather at first.

I hope the new amitrriptyline plan works well with none of the earlier problems.

You are never whiney though you have much to whine about. I'm sorry about the wing mirror. Mr SW has just been done for driving in a bus lane - with photos so no denying it Apparently, it was my fault :roll:

dreamdaisy

How the heck was that your fault, Sticky? :? I'm sorry about the wing mirror, Sophie, but it is something which can easily be repaired - unlike us. Communication between departments is often unreliable and it's always the patient that pays the price. Keep up the good work (I hope the motivation lasts at least a little while longer) and that further damage can be slowed to a notable degree. DD

stickywicket

Having done one circuit of the fairly unfamiliar town we were stopped at traffic lights and could see the desired building 100 yards on the left. He asked if we could turn left there and I said another car had done. It turned out the other car was a taxi and it was them and buses only. We had both failed to read the lane sign painted on the road. He was actually taxiing me to a lunch with my friends but I don't think it's worth pleading taxi status

Sophie, I wish you well for the coming week in work, exercise and rest. how are you getting on with the amitrip?

Slosh

Starburst, I've read your last post several times and still can't find the whine. Please can you give me a clue as to where it is.