Never give up if you know something is wrong with you - especially if you're a woman

[tangocharlie]

Far too many of us have problems getting diagnosis and treatment for PMR and GCA (and everything between) and it seems that, as many have been saying for years, for some reason it is harder for women to get the right diagnosis and treatment for so many things. We have to be our own advocates and be persistent. It took me nearly a year to get dx with PMR, I kept being told I was suffering from stress and needed to do more exercise. Over 10 years to get help with bladder problems, I'm still battling to get help for the allergies I'm told don't exist. One of my besties was told she had IBS when it was Ovarian cancer, another that her fatigue and brain fog was just old age when it was a brain tumour ..... and so it goes on.

This article in some way gives me hope that there are organisations trying to address these problems, (and could probably do with our support BTW). Of interest not just to the women on here but for men too, who may apparently according to the research have a slightly easier but not easy ride either, especially those trying to help and support the women in their lives

aol.co.uk/entertainment/wom...

[fmkkm]

Thanks Tangocharlie!

[123-go]

I totally agree! Like your friend one of mine was privately diagnosed, after months of GP appointments, with a brain tumour at the stage where had she not been operated on within two days she would not be here. She is left with epilepsy.

No one would want to be in your shoes, TC. Keep fighting the good fight. Wishing you the strength to keep fighting for recognition of and treatment for your allergy issues.

[Grammy80]

What a wonderful post....so true. I'm in that boat of oops! The doctor missed that....several times. We know our bodies....in the States, my recommendation is to get to a large city hospital or Mayo Clinic (low cost) when you know something is amiss. To fellow GCAers---once I was diagnosed, my opthalmologist referred me to a neuro-opthalmologist who has been an extremely important part of my treatment and, no doubt, saved my other eye. Thanks, Tangocharlie. (Incidentally, my favorite dance)💞

[Animalover65]

Thank you very much for this post tangocharlie. I will read the article and look up the Fawcett society later. I totally agree about advocating for ourselves and being persistent. It is no longer the 1950s when women often talked of being under that nice doctor and taking those magic tablets! 😊🌺

[Nightingales]

Thank you for the post Tangocharlie. You have given me the impetus to try to sort out the latest confusion caused by my rheumatologist. I was just about ready to give up and let nature have its way.

Last year I was almost bed bound for four months because he virtually patted me on the head and said it was a bit of osteoarthritis, it was Avascular necrosis. Dr Birch who does the osteoscan suggested the rheumatologist might look at a different med as I have frail bones, no osteoporosis. So the rheumatologist asked my GP to refer me to the osteoporosis clinic to discuss with another dr. Referral was made but they will not give me an appointment without a letter from my rheumatologist, which does not materialise.

Lastly, he has just sent a letter to my GP saying I am doing well (not true) and to put me on Alendronic acid, which I am allergic to since he prescribed it six years ago. It is plastered all over my medical records!

On top of this I was sent to an ENT because of severe earache without known cause. He called and said MRI was fine and he would refer me to Maxillary Facial. When I checked the MRI it said severe sinus infection and some other bulging abnormality. He had missed it!

Be sure to check all of your test results!

[PMRpro Ambassador in reply to Nightingales]

That level of incompetence needs a complaint, as does the paternalistic patronising attitude. And you need to run a mile from him asap.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

RUN a mile on this forum? … some hopes… but get your drift 😊

[PMRpro Ambassador in reply to DorsetLady]

He's so bad I'd be aiming to do more than just walk away ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Totally agree...

[tangocharlie in reply to PMRpro]

Definitely needs a complaint, he's a danger to others and they need to have an investigation

[Nightingales in reply to PMRpro]

Ha ha. Walking 10 steps is a challenge! You are so right. I have put up with it for 7 years. I don’t know how to switch other than going private.

[PMRpro Ambassador in reply to Nightingales]

If you have a decent private one and a helpful GP it is a start. Though I wonder if this new "automatic right to a second opinion" that was mentioned yesterday would help.

Where are you - ish, not the address? The second opinion does need to be from someone sensible and engaged.

Oh and a PS - just read your bio, perfect for background for us!

[Nightingales in reply to PMRpro]

Thank you. I need to update my bio. The saga continues! I live in Northamptonshire, East Midlands. need to research second opinions. Fatigue is a problem.

[Stills]

great post thanks for sharing