New to group after advice: Hi, i'm looking for a... - NRAS

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New to group after advice

LissH
LissH
9 Replies

Hi, i'm looking for a little bit of advice or where to get it. My mum has RA had it for almost 40yrs. When she first showed symptoms her RF factor was negative and the symptoms, joint swellings pain etc where not symmetrical. I have recently been told I have early onset osteoarthritis in my hands and knees however I am experiencing joint swelling and heat in my knuckles that is extremely painful especially if the joints are knocked. Sometimes it's a couple of fingers on the same hand but not the other and then weeks or months later the other hand. I mentioned this and my mum's history to a RA doctor who just dismissed it. I'm a little concerned as my right index finger is now ever so slightly bent and I'm worried the joint is becoming damaged with the flare ups. Should I go back to my GP and push the matter or see how it goes?

Regards LissH (37yrs)

9 Replies
oldestnewest
Mmrr

I think you need to see your GP soon and explain your symptoms and concerns, emphasising that your mum was seronegative. Despite much publication a discussion in the rheumatology community about the misdiagnosis of seronegative RD and the damage that can be done whilst Drs do not act , the news not seem to have been assimilated by some Drs.

Do not allow yourself to be sidelined, be strong. If you still meet a brick wall I suggest putting your concerns in writing to the GP practice.

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LissH
LissH
in reply to Mmrr

Thank you for your timely response, I was thinking of going back to the HP, was just worrying that as they have already stated it isn't RA, that they just won't listen but I think I need to do something, I've seen how a delay in diagnosis and treatment has affected my mum.

Thanks again

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Mmrr
Mmrr
in reply to LissH

Best wishes , do let us know how you get on.

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Hidden
Hidden

Welcome LissH. I would definitely go back to your GP and keep going back until they do something. You need to find out what’s going on so you can get treatment of some sort. Sadly sometimes we have to pester drs. Do take photos of swollen joints too so you can show them and keep a diary of what’s happening. As Mmrr said,be strong and don’t be fobbed off. Best of luck and I really hope it isn’t RA but do keep in touch here 😊

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LissH
LissH
in reply to Hidden

Thank you for your response, I'll be booking the appointment as soon as I can, my only problem is I might not have a flare up at that specific time, and think I'll just be told forget it. I'll push the issue as best I can see what happens, thanks

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Hidden
Hidden
in reply to LissH

Hence the need to take photos to show them 😊

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mickeysmom34472

I have RA also and am on Leflutomide. I need to have a blood test every time I see my rheumatologist. They can check your blood work for markers where there may be inflamation and also to be sure your liver is ok. Have either of your doctors sent you for a blood test or did they just assume it wasnt RA?

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LissH

I've had blood tests all showing negative for the RF factor, but my mum who developed quite severe RA, when she first started also had negative blood tests and non symmetrical symptoms even to this day different joints on different sides of her body are affected differently.

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holly-willow

I started to get pain in my fingers in my late 40's and was told it was OA. Over time nearly all my fingers have bent over at the top and been painful. As I have RA, I have often mentioned it to various doctors and rheumys but they have all said that it is OA and that nothing can be done to stop them bending. At one time some of my fingers were so sensitive that if I touched them or anyone else touched them I almost screamed. In fact I did scream out once when an old man shook hands with me and I had forgotten about it. I think I really frightened him.

I read so much about getting the right treatment to stop this kind of thing happening and yet I have been offered nothing to stop it. I am on treatment for RA such as mtx, hydroxy and a low dose of steroids.

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