Up and Down what is it?????

liesa

I have had a message from my OT today and i'm so confused,
i was asked by my OT what my problems were and as always i say what i am told, Rheumatoid arthritis, then someone will say when they hear my left knee has been replaced 'oh must be osteo' i dont know...
iam wondering what the hell im doing here right now... feeling crap and lonely with my joint pain.. but to read what my Dr wrote to the OT when she had to find out for sure what my condition was before putting in place and getting the wheels turning for my downstairs loo/wetroom...

this is what my Dr wrote back to her and i've only just seen this and its left me so low

He confirmed that though you “have been diagnosed in the past with Rheumatoid Arthritis. However a recent bone scan was normal & did not show any evidence of inflammatory arthritis”.

He did confirm that you have “chronic pain from her joints…”

He also stated that …”An exact cause for her pains has not been clearly identified but she is incapacitated by the pain when she gets an exacerbation.”

He stated that you have “been referred for bariatric surgery”

He concluded “s she is at the moment I feel that it was entirely appropriate to modify her house to make access bathing & use of WC easier”


my last blood test several weeks ago showed 'inflamatory' so awaiting results for the new blood test done only last week... this was because i had so much pain in my ankle even hurts just touching it....
i'm making an appointment to see my Dr at the end of the week but i think i will end up in tears......

woodbon

Hi, It sounds a bit like some of my hospital letters! You'r right to discuss it with your GP, they do hospital speak! :shock:
Love Sue

skezier

Hi Liesa,

Its sometime daunting and frightening this bone shift,. What is good is they accept you have the pain and they are recommending things to make life easier for you.

The knee replacement thing.. it can be for any of the bone things, though often oa, and well Legs had her knees done for RA and Iris for PA cus both had erosion and huge pain.

Liesa inflammation does not always show in the MRI and your bloods showing raised inflammatory markers does mean something is wrong so hang i there and if you do end up crying... flower I think most of not all of us have done just that.

hang in there and maybe your gp can help with understanding what he actually means. Hope so much you know that although you feel alone you do have this lot and you dogs so its just a bad day your having and tomorrow I hope will be a lot better. ((( ))) and a hope. Cris xx

valval

these people do make our blood boil if you had ra you still have ra but might be in remission at moment as others have said you can have joint replacement with ra as well as oa due to inflimation causing dammage to joints and tendons stay strong ask for answers if you look in site there information about ra that explains it all good luck val

ritwren

Liesa, I just wanted to send you big hugs and show my support for what you're going through. You can of course have RA and Osteo and I think it's best if you discuss it all with your GP. Dr's do have a language of their own and it's not always easy to understand.
At least it's positive that someone is going to put things in place to help you and that's one of the main things.
Cry if you feel like it and don't be beating yourself up for it. You're coping with a lot at the moment and they need to get things under control for you.
Let us know how you get on.
Big hugs, Rita.

frogmorton

Hi Leisa

you poor girl :sad:

Huge hugs from me while they muck you about and confuse you :???: .

Those of us with negative bloods do have to fight like this. :sad:

You get down to the docs like the others have suggested (with support if you can) and try to get some clarity if it's possible. Bawl if you need to as well.

I agree with Cris - it is more than possible to have more than one thing going on.

Love and hugs

Toni xx

hileena111

Hi
I'm so sorry......at least {as has been said} they recognise you are in pain...thats something.....sometimes you get the feeling its "go away and dont bother me"
Yes see your GP......I get copy letters of all appts. and its so true......you do need a GP tyo translate them...I dont do "medic talk" either.
Let us know what happens
Love
Hileena

liesa

I'm so lucky to have you all, thankyou again for your support xx am going to print that email and take with me, will wait till the end of the week when hes less busy and ca give me more time to talk about it, i get so angry then i dont want to take any tablets as im thinking maybe its all in my head and of course end up in agony and then takes longer to get going .... grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr


my heads all over the place! no two days are ever the same!

hileena111

Of course its not in your head.......they had said you are suffering with pain....even if they havent given you an exact diagnosis.
So you take what painkillers you are allowed to take.
Listen to your mother

Love
Hileena

dibdab

It's not in your head- and don't they screw our heads up with all their doctor speak!!!! Sometimes wish they could live inside my body for a few weeks and understand what it feels like and how unpredictable it is.
When my Rheumy didn't seem to want to listen/talk to me(he was all about blood results), I asked for a referral to a new one- after some persistence it worked and the new guy has really got things moving and diagnosed lung complications that will need respiratory consultant input-so I think I understand a bit of your frustration.

Believe in yourself and be persistent-you can do it!!!!!!!
Take care of yourself.
D

liesa

ok will do mummy xx thankyou xx

julie47

liesa just sending a hug (((((((())))))))))


and hope the doctor can explain things to you when you see him

Love Juliepf x

liesa

thanks Julie,


i went to see my Dr on friday evening and took a copy of what i added here, email from OT,
my Dr was and is always very supportive towards me, he asked me to my face about certain things i could or couldnt do, and he made notes, he told me he will write up a report and im to collect it this week for which there will be no charge... he asked if i did shopping, told him i went with either Steve or my Kids and i wont carry heavy shopping as i cant straighten my elbows, he asked about washing, again i said i can do most each day but as for showers/baths i wont do alone, that medical assessor wrote the oppostite of what my answers were, i pput mt reading glasses on and managed to decipher a lot more of what he wrote, i specifically told him i cant peel and chop veg he ticked box saying i can,
grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
i told my Dr all this i think he wasnt so happy about it all...

anyway we have now photocopied the medical assessors report and have highlighted the areas hes wrong and added page number to match the comments, all looking very efficient so just awaiting the drs report and see if this helps, but certainly wont hold my breath!

traluvie

Hi Leisa..

Glad to gear your doctor is so supportive,, he has been very thorough with the letter and that is what you need so you do not feel like you are doing this on your own..
I hope you get things sorted luvie.. hang in there, were all here to support you..xx

ritwren

It's great to hear your Dr is on your side and seems to recognise the problems. I hope it works out for you and things get sorted out. Sending good vibes your way. Rita.

liesa

thanks all xx feeling more positive now... just awaiting my Drs report for me to send off xxx