Waiting Game.

[NobleExcalibur]

Hi all, I am currently playing the waiting game in regards to what is going to happen with diagnosis of my condition.

I went to the hospital about 2 weeks ago, the consultant I was seen by said that I had been sent to him in error, as he is the last stage before surgery. He sent a letter to my doctors asking me to be referred to City Hospistal (Birmingham) to see a professor in RA, I was quite happy at this because I would be seeing someone who knows what they are saying rather than a doctor looking at me and telling me I do not have RA (I have had that before)

Should I contact my GP to push the referral to the Professor or sit and wait until I have seen the doctor and then push it?

I am in receipt of ESA, which is covering me whilst on sick leave from work, yet I cannot help but feel that the future does not look too bright for me.

Being 30 years old, with 2 boys (one of whom is still in nappies) and being used to being pretty active (riding my bike, walking where I could rather than catch the bus), I cannot help but feel down about the whole thing.

My wife and I took the kids up to West Bromwich last week. It took a lot of energy out of me and I felt the reppercussions for days after, but I could not help but feel down about seeing people walking around etc.

Im going so far as to have a look at the cost of wheelchairs (although I would more than likely end up hurting my wrists more than they hurt now) just to see if they are going to be the best option. My wife has already pointed out to me that she wouldnt be able to push me due to her having to push the pushchair.

I want to just go back to being me again tbh, I dont feel right and it hurts me physically and mentally being in the position that I am in now.

I am currently walking around on a crutch, although I can manage to walk unaided some days but even those days feel rare now.

Sorry for the rant but someone out there will know where I am coming from and hopefully can help me out with some information or something.

Thanks

[cathie]

This doesnt sound very good. You should be referred to a proper rheumatology department and there are tests and treatment plans they should be developing for you. Then you'll be able to assess the situation, but its uncommon to be in a wheelchair - but that's something the medics can assess.

If you're anywhere near, the Nuffield Orthopaedic (NHS) in Oxford is a specialist department not a million miles from Birmingham (depending on what side you're on). But I hope you can get some joined up expert treatment - it doesnt have to be as bad as it seems at the moment.

Cathie

[NobleExcalibur in reply to cathie]

I wish I was near oxford lol, I wouldnt be able to get there without help from my wife and we dont have childcare for the boys, I am hoping to get something sorted where I can see my old RA doctor from when I was a kid as he knows my condition like the back of his hand but he only deals with kids

[cathie in reply to NobleExcalibur]

I hope you can get to see this doctor if he understands you. I've had (very) good and bad rheumeys and they do make a difference. I'm in the mess I'm in currently because of a dr who was unresponsive and uncaring and now have found another who is responsive and thoughtful.

Have you thought of flagging up more clearly where you are so that people near to you can suggest - via messaging if necessary?

[NobleExcalibur in reply to cathie]

I have done, I live in West Bromwich tbh I wish that the doctor would listen to me and not rush me out!

Im looking forward to taking the boys to the zoo on friday, but im renting a scooter so that I can get around, its going to be so embarassing lol but its going to be worth it

[cathie in reply to NobleExcalibur]

Most important is you do what u want. My grandson aged 10 loves wheelchairs riser chairs and the like. So he's the first to volunteer. His friends are the same

[NobleExcalibur in reply to cathie]

I have never wanted to be in the situation what I am in now, its always been in the back of my mind that due to how bad it was when I was a kid that it may come back and knock me back, but I am used to riding my bike (now in the shed catching cobwebs lol) and walking here there and everywhere! I could easily walk around the zoo before and would love to do again

[cathie in reply to NobleExcalibur]

I'm unable to do things I'm used to as I'm waiting for knee replacements and am stuck inside. They don't really know if it's ra or oa but it takes your life away.

[NobleExcalibur in reply to cathie]

That it does, I started putting washing out earlier and had to get my wife to finish it as I couldnt stand up, Im having to keep my crutch near me all the time now too.. I live across the road from a country park where we can take the kids to feed the ducks and I cant even get down to there as there isnt anywhere to sit and rest on the way down.

[cathie in reply to NobleExcalibur]

I've had to agree to things I never thought I would. I see a physio who coaches the junior Scottish rugby team. She persuaded me to get a rollator I could sit on to go to art classes. A mixed success but it's kept me going until the knees. I'm hoping that will give me back some mobility. I hope you can too.

[flow4 in reply to NobleExcalibur]

I wonder if you could contact your old rheumy and ask him to recommend someone for you?

[Hidden]

Hi there. Are you on any medication for inflammatory arthritis at the moment? If not and if that is what is suspected .... by you at least, then I'd say push your GP to get an appointment with the professor (I guess he or she is a rheumatologist?) as soon as possible.

Delays can be made to seem unavoidable but when you push a little bit sometimes it turns out that they are not. In your position I would emphasise that you need to get back to work and that your children are so young. Delays in diagnosis and effective treatment impact not only on you but on your whole family. There has been one error, and it sounds like quite a big one, and now your GP needs to pull out all the stops to remedy that.

The future may just be a whole lot brighter than you think. If it is indeed RA or another type of inflammatory arthritis that you have, there are some very good drugs that can often turn things around fairly dramatically. However, they are slow, they take time to work. That's just one more reason why you need to be seen soon.

In the early days of the disease it was determination to get things sorted that saved me from depression. I suppose that's because being persistent was one thing I could still do well. If it doesn't come naturally to you to ask for help quite assertively, then it might be time to develop that skill. And if you come up against obstacles then get back on here & let off steam - we'll be right behind you I'm sure!

[NobleExcalibur in reply to Hidden]

Thanks for that I think the Naproxen is for the inflammatory but I havent had a flare up since I was young, thats the reason why it was pointing to OA. I have been feeling it in my hands too, I told the consultant that back in 2013, he took a look at the dimples on my wrists and knuckles and told me that I dont have the same type if any type of arthiritis

[helixhelix]

I think from what you've said before that maybe the problem is that you have both osteoarthritis and an inflammatory arthritis - a lot of us do. You're young for such bad osteoarthritis, but my knees first started playing up in my early 30's, and I had several repairs.

Anyway, so the surgeon you saw may think that the osteoarthritis is as a result of undiagnosed inflammatory arthritis, whilst the rheumatologists are just thinking that you just have a problem with your knees.

If I were you I would go back to your GP and ask them to explain to you exactly what is going on, and check that they understand that it's not just your walking but everything else. Take a list of your symptoms and ask them to tell you wat is causing each of these problems - and if they don't know them what are they going to do to find out.

[NobleExcalibur in reply to helixhelix]

Thats one thing that I have been thinking of doing, the problem is my GP is pretty hard to get to sit down and listen, they want you in and out asap..

I have been having memory issues too, where I forget words, they are simple things like the word shoes, I was telling my 4 year old to get his shoes on, I stood there and couldnt remember the word lol

My mother suffers from something (i cannot remember again ) where pain and memory issues is common and she said I may have that but getting a doctor to believe me is another thing

[helixhelix in reply to NobleExcalibur]

You can book a double appointment so you get 20 minutes, not 10.

[NobleExcalibur in reply to helixhelix]

Im lucky if I get 10 lol

[cathie]

Brain fog caused by meds.

[NobleExcalibur in reply to cathie]

Fibro, thats what my moms got, there is a fog sometimes and its something else that does my head in, thankfully my wife is understanding as to why im cranky most of the time

[Hidden in reply to NobleExcalibur]

So you're a 30 year old man with memory issues and possible inflammatory arthritis and your GP can't find time to see you. I'm dumbfounded.

Hows about you & your wife write down a list of the main issues and main requests & then both of them take it along to your GP? You could just use it as a prompt sheet. (Best to keep it as brief as possible without missing out important stuff, so work at it till it's just right).

Then, if you still don't get listened to, if you still don't get a promise to hurry up that rheumy appointment, you can send a copy of the list and an angry letter to the practice manager of the GP practice.

If you suspect that you have fibro that's yet another reason to see a rheumy ASAP!!!

[earthwitch]

Hope you have some joy very soon with seeing a doctor who will do something.

With regard to the mobility, could you consider hiring a scooter? There should be some kind of mobility place near you that would have scooters for hire. Some shopmobility places will hire long term too. I agree that unless you can get a very lightweight, energy efficient wheelchair (cost upwards of £2000) then it won't be easy enough to push to make you mobile. Been there, done that.

[oldtimer]

I'm not surprised that you are feeling negative about the future. You do really need some investigations and a working diagnosis, you need to see a rheumatologist asap, and also other members of the rheumatology team like the physio and the occupational therapist.

Write a description of your typical day (and night), and have a look at the sites: nras.org.uk and ww.arc.org.uk for what help you SHOULD be getting.

[Hidden]

Hi

I really feel it would be helpful to talk to one of the NRAS team, the helpline is open from Mon-Fri 9.30-4.30 on 0800 298 7650.

Best wishes

Lorraine