Diagnosis change!!

stickywicket

Morning Claire. I hope I'm in time to wish you all the best for your consultation. Let's know how it goes.

CJHunter

In waiting room as we speak Sticky.

Day hasnt started great, cant find house keys , think o/h has taken them with her to work. oops.
To all burglars.... Next door are arned and dangerous

Update hopefull later.
Clare Xx

Mat48

Oh dear poor you re keys. Hope u can concentrate on what GP is saying. I can't use keys at all just now - day five of right hand being out of action. So painful hey perhaps I should go to A&E while on hol and say think it's fractured? That might get it scanned and diagnosed at last?!

Good luck Clare look foward to the update.
Mat x

dreamdaisy

I hope it went OK for you today Clare, my apologies for being AWOL but my ma is staying at the mo at my time is not my own. I was on cyclosporin for a while, a good few years ago now. DD

CJHunter

Ok all heres the long awaited update...

G.P has agreed to refer me to Proffessor Davies at Guys for a whatever it is opinion ( lost count)
He has also given me amytriptaline to help knock me out when i am not working to get a good sleep, fingers crossed there then : Smile:

The MRI of my spine , although the last consultant has ignored this, shows bilateral pars defect L5/S1 with consequent grade 1 spondolytic spondylothesis at these vertebre. Havent a clue what that means but I would say that sounds like a rheummy thing?? :???:
He has also ignored the report from the knee surgeon who fixed my torn cartlidge that there was signs of O.A in knee. Now i know that is a rhuemmy thing!! :roll:
So mri is no inflammatory spondolytic spondylothesis, but Grade 1 S.S.

Anyhow at least referal has gone and even if not P.A we will see as will be starting cyclosporin for skin anyhow,( that is soooo sore at mo too) lets see if it does anything for bones too eh.

Wot a circus.

Can i sleep now :?: :?:

Wake me up when its over.

P.S. Mat get to A&E will ya, if its the only way do it, DD i know why you have been awol dont worry, know you still care
And all others thanks for your kind words.

Clare xx

kittymedaughter

Hi Clare, I am sorry to read you have been messed around between GP, Consultants and wrong diagonises... I have had fibromyaliga for 9 years and have been on 75mg amtriptline for most of that time...may i suggest you take them a few hours before you go to bed rather than at bedtime, they seem to work for me when I take them around 8pm. I usually take codeine and paracetamol just before i go to bed and when i am not having this awful knee pain, i get a better nights sleep, though i do wake up a bit as i have irritable bladder as well. I am then normally ok for work the day after without a groggy head from the meds

hope this helps some
Jano

CJHunter

Thanks for that, am already on buepronorphine patches and the tablet top up so think/hope this will knock me out fairly quickly. Will take after a bath at eight and get rested up tonight.

Hopefully i wont be up tonight, so if you see posting form me then you know there was a problem huston. keeping all crossed.

C xx

BikerAngel

omg what a time of it you have had but at least now you got a referral you might get somewhere. Amotryptoline worked for me when I struggled to sleep with pain so fingers crossed it helps you x

I have a good rheumy and he has been spot on with me as all my tests came back clear but the inflamation on joints were bad and at first got diagnosed with Palandromic arthritis which I had never heard of so home and after a long avo on google researching it I was more clued up and then 4 month later it had progressed so decided I had sero neg oligo arthritis as I still had no rheumatoid factor in my bloods but all symptoms and it has gradually got worse so the final diagnosis was RA. He has been very supportive all along and has quickly changed meds when needed and just waiting to see what my next concoction will be at app on Wed lol.

traluvie

Hi CJ,

I am glad you have got a referral, too be honest i didn't understand any of the medical stuff you said other than it wasn't taken note of like it should have been and i really hope the new doc will be on the ball and get things started for you..
Amitriptyline works well for me.. there are some nights when i am bad that it not so good but it certainly helps to relax me and get me off to sleep so i hope you feel the benefits too...if not at first you can increase the dose(only if doc say so.. )till your at the right amount that suits you..I would take it around 7 so you are not so groggy in the morning..
Hope they work, and lets hope this appointment comes through soon..x

angie1973

Fibro is a nasty old thing. The sleep problems are horrendous sometimes aren't they. Hope the ami's work for you. They made me feel too groggy so I had to come off it, but I've heard good things about it from other's so hope it helps the pain.

I got around 3-4 hours if I'm lucky too. Usually hip, knee or neck wakes me up with pain, irritable bladder.

Restless legs is another one of mine, which is horrible with OA in my knees as it really makes it painful.

Sounds awful you have been messed about so much, hope you get some sleep and get some proper diagnosis on what is going on. Labels or not, it's nice to know isn't it?

Take care
Ange..xx

CJHunter

Thanks for all your reply's, I realy needed that extra support. It is hard to keep fighting sometimes and so very good to know there are people who understand how it is, however different our conditions are.

Thank you.
Clare xx

stickywicket

I can't pretend to understand half of this, Clare, but I do get that things are moving now and that has to be good. Keep plugging away.

suzygirl

Clare, I hope the ami helps you, I find it to be really useful when struggling. I am naughty and use it as and when as it aggravates my dry mouth. It takes a while to work for me, so I take it early in the evening and it helps lessen the grogginess the next morning.

I am unsure of all the technical jargon, but is it possible they are saying your damage shows and OA pattern rather than an inflammatory pattern? This would be why he has re diagnosed you possibly?? If this is the case, a rheumy doesn't always deal with OA. Maybe its just my rheumy but he is spectacuarly unimpressed by my cervical spondylosis as it is OA and not his field. Yet it is my neck that causes me a great deal of problems. :roll:

Good news on the cyclosporin, be interested to see if it helps your joints. I hope the new rheumy is able to shed more light on things for you.

Take care

CJHunter

Fingers crossed.
Thanks guys,

As far as my consult is concerned I wish he would have said , hey i dont know what it is, or Lets refer you to someone who maybe able to help further. Instead he just said 'computer says no' and that is that.
Anyhow onwards and upwards.

Will post next instalment when i get app, or if cyclosporin helps beforehand.

Thanks again.
Clare xx

salamander

Hi Clare, sounds like progress. You'll find the amitrip really helps with sleep. I've stopped it but sometimes wish I hadn't!

CJHunter

wow, Ami worked, was knocked out for 8hrs, did wake at 3ish but was unable to move , felt stuck to the bed and eventualy drifted off.
Felt wooly today and ruddy stiff. Mentally the sleep has helped.

Cheers for support all.

Cxx

Mat48

Hi Clare that's great about the sleep! What dose of ami are you on ? I only take 10mg a night and going to see GP in Monday when I get home and plan to ask about doubling this dose while in flare as now. It calms nerves and muscles and slightly sedated but more importantly for me it suppresses desire to pee as us used in small doses with kids who have bed wetting probs I read. I have had a habitually pathetic bladder since having kids so very good bonus but think its waring off so may need him to up the dose as pain kept me awake all night last night but have been on ami for many months now. Hope you sleep well again tonight.
Mat x

CJHunter

Hi Mat, have been put on 10mg,
Might be advisable to see if you could take an extra half to see how it goes first, dont want to take too much if you can help it

Hope you get a better night soon.

Take care
C.xx

tjt6768

Hi hun. Hope you're getting on well with the amytriptaline..

CJHunter

Yeah Man yiu could say that, lol

ritwren

I'm delighted to hear the amitriptyline has helped. I have PA and Fibro and take 25mg and it's helped me get a better sleep. Best of luck.
Rita.

kevinwittering

Hope you get some relief.

Have lost all faith in doctors myself.

Best not put me on Ami if it knocks you out for 8 hours and even if you do wake up you can't move, would wet the bed 5 times before I could get to the toilet. Isn't getting older a bitch???

CJHunter

Kevin Im 38 so still in my prime

tjt6768

pah... You're just a nipper then
Glad that they seem to be helping though hun.