new and awaiting diagnosis

vickijaneholliday

hi,
New to this,thought I would speak to someone in the same situation that could point me in the right direction.
I'm 40 years old. Five years ago I started getting pains in my feet, mornings were worst walking the dog in the woods was really painful- the pain was under my feet,then my hands started then wrists.I had loss of strength in my hands and was in flat ugly shoes for about two years and on diclofenac.
My specialist did tests and I was found to have an RF factor in my blood!!??? but he kept telling me I had palindromic arthritis.
Slowly the bad days receded and it all seemed to go away, although, all be it, after almost three years.
I started to feel that my specialist was right,even though I by then had diamond shaped knuckles.
Now it's back,though not as bad,I now take Plaquenil. Further tests have shown I have a RF factor?? of 138 and I am sero-positive!!? this makes no sense to me and I can not find this info, or make sense of it, in any website.
My next appointment is in April but I want to know now-I'm impatient! can anyone tell me what this means.
I would love to speak to anyone in the same boat!
I would like to know about supplements that could help, I hate taking drugs.
please help.

mandy_b1967

Hi I am waiting on a diagnosis for my back, knees and ankles and have an appointment for next week although I don't think I will learn much then because apparently the xrays I had done a month ago havent been reported on yet.

Anyway have to tried ringing the consultants secretary you may be able to get information from her.
Mandy

vickijaneholliday

mandy_b1967 wrote:

Hi I am waiting on a diagnosis for my back, knees and ankles and have an appointment for next week although I don't think I will learn much then because apparently the xrays I had done a month ago havent been reported on yet.

Anyway have to tried ringing the consultants secretary you may be able to get information from her.
Mandy

Thanks for the reply,yes I've spoken to his secretary she wasn't helpful.I feel that I'm pestering.She just told me that the diagnosis of seropositive arthopathy (can't remember how to spell that!) is what it is,and I have to speak to the consultant at my next appointment.
I find my consultant quite unhelpful too,he seems to talk at me rather than to me and till now reluctant to diagnose.

Do you think you have RA.It sounds like you have the same unanswered questions,and the long waits, I hope you hear soon.

I feel now, after 5 years, as if I need to settle an argument, I know I have RA.
My friends and family rightly or wrongly are telling me that maybe it's this or that,perhaps to make me feel better,but now all I want is to prove I have it, but at the same time I really don't want to hear I have it!!!!??? does that make sense? it's so frustrating!
Oh golly what a mess I'm a very happy person really!!
It must be really hard to have the pain in your back,I get it in my shoulders and have taken time off work as I can't drive,that makes me miserable.Diclofenac though is working well.
good luck,next week.

mandy_b1967

I think that maybe you should ask to see another rheumy.

I do have alot of unanswered questions. I have had this back pain for about 6 years but saw a doctor about it just over 3 years ago. I also have pain in my ankles and knees. I think I have AS as I also have crohns disease and have been doing alot of research over the last few weeks. I have OA in my right wrist which they say was caused by a break though I have never knowingly broken it. But I surpose I will just have to continue waiting. I think its the waiting thats very stressful!

Do you have another choice of hospitals you could go to. Where I live we are half way between two and so have a choice.
Good luck
Mandy

woodbon

Hello
I'm sorry that you've been given such a lot of jargon when you spoke to the doctorl. The truth is that I'm not a medic, so its difficult to give you an answer to the questions you have.

Can you make an appointment to talk to your GP? They may be able to help you and get the consultant to send a report. Keep asking questions - its people who ask that get the most help. Its a sad fact of life, but its easy for doctors to think they've explained something and leave you with confusing information or things you don't understand. I've recently been in a simialar position myself, and had problems with communication between GP and hospital! :? I have a good GP and when I talked to her, she sorted things out for me.

I don't want to give you any wrong information, so I won't try and work out the test results for you :!: I'm not that clever. :shock: I hope you soon get the answers to your questions and the treatment you need to make you feel bettter quickly. Good luck, Sue PS Other people on this site will have more experience than me. I'm glad you've found us!

vickijaneholliday

mandy_b1967 wrote:

I think that maybe you should ask to see another rheumy.

I do have alot of unanswered questions. I have had this back pain for about 6 years but saw a doctor about it just over 3 years ago. I also have pain in my ankles and knees. I think I have AS as I also have crohns disease and have been doing alot of research over the last few weeks. I have OA in my right wrist which they say was caused by a break though I have never knowingly broken it. But I surpose I will just have to continue waiting. I think its the waiting thats very stressful!

Do you have another choice of hospitals you could go to. Where I live we are half way between two and so have a choice.
Good luck
Mandy

Thanks for that, yes perhaps I should find a more approachable rheumy and I too live between two hospitals.I'll see what he says in April and make my mind up then.
This is the first time I have contacted people on this forum I couldn't work out how to do it before! some great people,with such a great knowledge.wow I wish I'd found it years ago!

vickijaneholliday

woodbon wrote:

Hello
I'm sorry that you've been given such a lot of jargon when you spoke to the doctorl. The truth is that I'm not a medic, so its difficult to give you an answer to the questions you have.

Can you make an appointment to talk to your GP? They may be able to help you and get the consultant to send a report. Keep asking questions - its people who ask that get the most help. Its a sad fact of life, but its easy for doctors to think they've explained something and leave you with confusing information or things you don't understand. I've recently been in a simialar position myself, and had problems with communication between GP and hospital! :? I have a good GP and when I talked to her, she sorted things out for me.

I don't want to give you any wrong information, so I won't try and work out the test results for you :!: I'm not that clever. :shock: I hope you soon get the answers to your questions and the treatment you need to make you feel bettter quickly. Good luck, Sue PS Other people on this site will have more experience than me. I'm glad you've found us!

thanks yes I'll do that,I just feel that I'm pestering but I suppose If I'm right and I do have RA I'll have to get used to pestering!!
I am so amazed at the help I've received this is my first time on the forum,wish I'd found it ages ago.
Thanks again

frogmorton

Hi Vickyjane....
Welcome from me!!!
Yes you o have to get used to being a nuiscance and that's if you're lucky enough to get a diagnosis at all!!
Seriously though I am so sorry you're in the same boat as us and hope you are ok emotionally too.
The response to my queries is always great too!
Take care
Toni x

vickijaneholliday

frogmorton wrote:

Hi Vickyjane....
Welcome from me!!!
Yes you o have to get used to being a nuiscance and that's if you're lucky enough to get a diagnosis at all!!
Seriously though I am so sorry you're in the same boat as us and hope you are ok emotionally too.
The response to my queries is always great too!
Take care
Toni x

Thanks for the post,I guess I have to rock it now-the boat I mean!
emotionally -getting there.
vicki x

lindalegs

Hi Vicki and welcome to the Forum,

I've had RA for many years but am no good on the technical terms and would hate to misinform you - I think it just basically means you've been put into a pigeon hole :shock: - fortunately it is a rather large one for us all to fit into

You're bound to want to know but not hear the words said - I think we all must have felt like that in the beginning. Once those words are said it makes it real, whereas if it's not confirmed there's always the chance it could go away :roll: I'm sure it will be better once you know what you're up against, after you've got over the initial shock - which is only natural.

Please keep us informed and if there's anything we can help with there's always someone on here with an answer or three.

Luv Legs