Gp is writing to Consultant

jenzie06

Do you think even if I am seen anything useful will happen?
Big fat NO!

Went to see GP (almost cried) really struggling with Harry (who is gorgeous and lovely but is not crawling or walking and is desperate to move and is a bit of a lump and is killing my back). Various bits hurts but I think that the RA may be fairly under control with antiTNF but fibro is playing silly beggars. Plus I've hurt my knees (according to very nice physio I have bio mechanical instability or wonky legs - goodness knows why it should start hurting now) and the base of my neck is v v painful.
Haven't seen anyone from hosp since starting anti TNF (now 6months), apparently no appt planned for antiTNF nurse ever again and consultant is running 4months behind.
I'm expecting to be told that its 'just' the fibro and there's nothing they can do. Fun!
GP wants me to have mri on neck but apparently can't order it only consultant can do it but he won't as he generally puts everything down to fibro.

AGH!!!!

chris7

Oh dear Jenzie!

I can't offer any advise but it does seem like you are being left to get on with it rather than getting the appointments you need there!!!. Really hope the letter from the GP gets something sorted soon.
Just wanted to call in and acknowledge your AGH!!! and leave some cuddles for Harry and hugs for you. (((( ))))
Hang in there and keep in touch.
love
Chris

jilly

Hi I have just been diagnosed with fibro , I went with terrible pain in shoulders and neck,it as taken years but i knew there was something else going on with me they now think i also have sjorgens so it seems you can have all sorts of different things going on , I know what you mean about them just putting everything down to what ever you already have. Getting to see anyone is hard , i found they dont want you to have an opinion .I hope you get to the bottom of it , i found that you have to insist on being tested ...........jilly

dorcas

Oh Jenzie, it's so unfair that you have to wait to be seen by the consultant before an MRI can be authorised. :roll:

Baby Harry sounds so lovely .... but lifting and carrying him must be putting a lot of pressure on your joints. Can you call on extra help just now from doting grandparents or friends? It might help if you could get some rest during the day.

Your rheummy doesn't sound too helpful and is certainly difficult to see if he's running 4 months behind with appointments. :???: Do you have any other contacts in the hospital... rheummy nurse, a physio or even OT.? Perhaps one of them could speak to the consultant on your behalf?

Not having any follow up when on anti tnf seems very unusual.... who are you supposed to contact if you have any questions or worries?

I'm sorry Jenzie that things are so difficult for you just now! I hope the GP has marked the letter Urgent.... and that you get a quick response.

(((hugs)))

Iris xxx

tkachev

Hi Jenzie,

You are well and truly stuck at the moment. I am amazed nobody is monitoring you on anti-tnf. Or maybe they are and will call you if bloods show any issues.However I had checks one week after sarting anti-tnf and regular chats afterwards where I mentioned any concerns.

They never seem interested in how you are coping with children. I am convinced they feel you shouldn't have them if have arthritis so you are left to deal with it. I remember how difficult it all was, changing nappies, bathing, feeding. However once he starts walking it will need you to be on your toes for different reasons and they still want to be picked up all the time although he might work out how to climb up to you and sit next to you for cuddles himself.

I remember you got some direct payments. I know it is never enough as the pain is 24/7 but can you increase it? Mind you with all the cuts they are more likely to reduce it!

Hopefully your consultant will take note of GP's request for a change otherwise you are getting nowhere.You really aren't getting adequate care in my opinion.

Elizabeth