Finding it hard to trust doctors....

During the summer of 2013 my feet became inflamed and went from a size 8 to a size 12!! I went to 3 different doctors and they all told me that I must of wore "pointy-toed shoes" in the 1980's, and now that I'm older I'm paying the price for that fashion....The 4th doctor had my feet x-rayed. This x-ray stated that I had "bone erosion" on both feet. This doctor informed me that this was because I must of gained alot of wieght.....The 5th doctor I went to see took one look at my feet, gave me a blood test and diagnosed me with RA....Is this normal?

[scooter13]

Erosions normally indicated Ra I also have erosions in my wrists and hands and probly more places my bloods was normal too this was over 2 years ago and I was also diagnosed with RA now I'm thankful I seen the doc about my daily troubles iv unfortunately been taken off my meds recently and feeling like I used to but hope I get back on my meds soon just stay strong need to speak to anyone come to this site its been a great place for me

Hope you get sorted out soon xx

[flow4]

I don't know if it's common, but it's not UNcommon... I went to the doctor 8 times over 15+ months complaining about hip, leg and groin pain, but was dismissed - all she offered me was anti-depressants. o.O Eventually I self-diagnosed with hypermobility syndrome and pushed for a rheumatology referral; they confirmed that and took x-rays as a 'baseline'. The GP didn't even review the x-rays when they came, but luckily I moved house and changed GPS soon after, and the new GP took one look at said "I think you need a hip replacement"... The x-rays showed early arthritis in my hands and feet, but stage 4 in my hip. I had the hip replacement last May and have spent most of the last year recovering... Now my hip has healed, it's becoming increasingly obvious that there's something systemic going on - my hands and feet are both now deformed and I have nodules on my hands and arms and feet (I think on tendon attachment points), plus backache, bum-ache, GI problems, arthritis in other parts of my body including my jaw, and various other problems... I am waiting for another rheumy appointment in August...

If I'm feeling charitable, I can recognise that these are complex conditions that often fluctuate, overlap and look like each other, so that diagnosis can be tricky... If I'm feeling *less* charitable I want to sue that first GP's a*se for leaving me in pain for so long! Doctors like that - and like the ones you've encountered - need to learn to LISTEN and not dismiss what we're telling them.

[Livingston]

It took me over a decade to get a diagnosis. Even then, it was AN autoimmune disease, not the one I actually had.

There were times I felt like I was completely off my head because of the changeable nature of symptoms and the casual, belittling attitudes of some of the people I saw.

Even now, with an established diagnosis and a long track record of treatments & tests, I find I still have to keep on top of it all myself - checking up that test results have been read & acted upon, letters have been written & sent, prescriptions written and that all the necessary monitoring is being done. It is scary how easy it can be to fall through the cracks.

At least now you have a diagnosis you should be able to get on with feeling better. Good luck!

[flow4 in reply to Livingston]

I think you're absolutely right about the 'self-management'! I now ask for copies of test results and consultants' letters... It makes me feel like I'm neurotic but I try not to let that stop me!

[Livingston in reply to flow4]

Someone else on here described it as a 'self service disease' a wee while ago & I think that's so right.

A while ago, a scan that showed I had erosive disease in the top 2 vertebrae of my neck sat in my file, unread for a year. That's the one effect of RD that can result in sudden death and it needs an aggressive and timely response. Since that happened, I can't trust doctors at all.

[flow4 in reply to Livingston]

Good grief, I'm not surprised!

I've had lots of adverse effects because doctors have not listened or have missed things... But nothing life-threatening, I don't think...

[Livingston in reply to flow4]

Fortunately, it hadn't got to that point - and now it won't because I know the problem's there.

Soooo annoying that we bear the brunt when doctors don't do their jobs.

[flow4 in reply to Livingston]

YES!

[Hidden in reply to Livingston]

That's bloody awful!! There is no excuse for your file to be left unread for a year.

I don't blame you for not trusting doctors. I hope you found a good one now. Take care and I am sending you gentle hugs

[Livingston in reply to Hidden]

Thank you. I have a different rheumatologist now - younger and much more pro-active.

I hope you get on well with your latest doctor.

[Hidden in reply to Livingston]

Yes it is very scary how you can fall through the cracks. I am glad you persisted in seeking a reason for all your medical issuses.

10 years of seaching for a diagnoses!! I took me a year to find a diagnose and I thought that was a long time.

All the best to you

[chlopage]

I too had trust issues with a GP, and a specialist. (Thankfully I found the will power to stick up for myself and changed my specialist and eventually my gp surgery)..

Unfortunately, I got neglected... I mean.. Who's GP would miss a failed kidney for 12years... *yes... I'm sorry to say this story is true in my case..*

Back to subject with your feet... Do you wear orthotics? I've been wearing them for twenty odd years (ish) for my collapsed arches. They help keep my feet in the right shape to levitate the pressure in my swollen ankles..

Kind regards,

Chlo x

[Hidden in reply to chlopage]

Hello Chlo.

Yes I now wear orthotics and they do help my feet alot. My arches are fine, but all my toes are all clawed. I also have the added bonous of my 2nd and 3rd toes doing the Vulcan "Live long and Prosper" sign lol...My hubby says we will never starve because I could catch small rodents with my claw toes He always knows how to make me laugh

Your GP missed a failed kidney for 12 years? That's unbelievable!! You and I could share horror stories. I too have, and I hate to say, have many unbelievabe doctor stories. When I think about my past with certain doctors, I find it hard to believe it actually happened....January 1st 1988 my GP dropped my baby after I gave birth, my son died 45 minutes later...April 1989, my second son died 2 days after his birth. Why? Another OBGYN cut his head penetrating his brain durring my C section.

I find it very hard to trust or even like doctors.

[Hidden in reply to Hidden]

I'm sorry for blurting that out Chlo. I just started typing about doctors.

takecare

Sue

[chlopage]

Hi sue, don't worry about blurting!

Hahaha ... Your husbands comment about the Vulcan rodent toes made me giggle.. How brilliant!

But in response to your experiences.. I'm flabbergasted, dumbfounded and sickened. There are no words to justify why you should like or trust doctors! And I'm also very sorry to hear that actually happened to you poor thing.

Kind regards ,

Chlo x

[Anne-54]

I Know where you are coming from Suzannedale. I too have a real problem trusting doctors. Although this isn't related to my RA. 15yrs ago I was diagnosed with Breast Cancer, if I hadn't convinced the Consultants under study, I would'nt probably be here typing this. I managed to convince him there was more wrong, so he sent me for an ultra sound, and low and behold they found it. I often sigh with relief, as I just knew there was something not right. Where my RA is concerned it took moving to a new doctors to get that diagnosed. So I totally sympathise with you.

Kind Regards

Anne xx

[Hidden in reply to Anne-54]

I'm glad you convinced the consultants to look for breast cancer. I shudder to think of how many people have suffered because they didn't push the doctors.

I used to "suck it up" when doctors told me that everything is fine. My first symptom of RA was in the summer of 2013. My feet went from a size 8 to a size 12 within a month!! I went to 4 different doctors and they all said it was because I wore "pointed" shoes in the 1980's. I found it hard to believe that the shoes I wore as a teenager would bother me now in my mid 40's.

I'm glad I kept searching for an answer.

Take care

Sue

[Anne-54 in reply to Hidden]

I know what you mean. Now I'm in my 50's the doctors put nearly everything down to my age. Oh and I'm not that trusting of Nurses either. The breast care nurse, told me to put it down to experience. I can't say it was an experience I would have willing chosen lol. I think I have a very strong miss trust of anything medical. I now take my husband with me, when ever I have a consultation. Two heads are better than one, that sort of thing. My RA symptoms were ignored too, until I moved doctors, and the new doctor decided to send me for tests. Thank goodness.

Hope you are doing ok.

Anne

[Hidden]

I'm still trying to find a new rheumy that will examine me, not just look at his/her paperwork on me.

[Hidden]

I hope the new rheumy I see in September will be able to sort my meds.