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Went to see my gp tuesday, he is now not sure wot I have now he has results from rhuemy! Tested for Lupus + RA said tests did not show any raised levels this time! My hubby thinks I should go private so I can get it sort it out! Has anyone else done this?
 

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elisabethm
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Hi Jo did you get told that you had lupus as the first rhumy said yes i had it was stared on palequine.My last appointment another rhumy said he was not sure if that was what it was but i am still on the palequine.When i went to my own doctor he was more sure than the rhumy i would go with what my own doctor says as i have been going to him for years.I was at another doctor on tuesday for my feet as i have pulled a muscle in my foot and the first thing he said was i see you have lupus asked him how he knew and he told me it was on his computer from my last appointment at his clinic can you not ask for a new doctor as it is a disgrace that you would have to go private how do you get on with your own doctor can not ask him to send you to another rhumy Keep us up to date wlisabeth
 

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Hi Jo

how frustrating!:mad: ..I can truly empathise as I have had a similar experience...

I was diagnosed with RA nearly 15 years ago.... only to be told nearly 2 years ago that I might have RA with lupus overlap.
then about 6 months later (I think?) I was told that I just had lupus because my xrays had shown that there weren't enough erosion's on my bones.....

then only last week another rheumy siad that I have got an RA/lupus overlap because of my joint deformities :rolleyes:
certainley puzzling to say the least :rolleyes:

If being treated privately is an option then yes I would consider it...I went private years ago & it got me what I wanted at the time...however I didn't continue with it because I could see the same rheumy & have the same treatment on the nhs so I didn't see the point.

another thing to remember jo is that blood tests are not conclusive..they can show up positive one minute then negative the next (sorry I can't elaborate though as I am not very knowledgeable at all regarding tests etc :blush: )
are you on any medications at the moment jo? & what is your rheumys view on all this?
also,what is your gp suggesting now?

best of luck to you..hope you get some answers
:hug: karen x
 

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Hey jo191070

I went private in the end using my medical insurance. I got so fed up of Dr's telling me I was depressed. It was only when the rash started and I change GP surgery that they actually started to listen and pay attention. They sent me to a dermatologist cos they thought it was allergy. Strangely all the allergy tests were negative so sent me to the rheumatologist.

My message is do not give up, persist. It may take time. I did see a gastroenterologist a few years ago and he dismissed the ANA results as irrelevant even though they couldn't work out the low B12 and he ignored the back / joint pain he still didn't think they mattered. Numpty!

I was dx last year and although still feel tired a lot of the time the rash is much better!

Hope you get your answers soon... Keep us posted

Take care
Claire
 
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