Help.... My GP thinks im crazy!!

Hey every one, just come accross this website for a bit of advice..

ive recently been waking up with crippling pain in my knees during the night, which wakes me up and keeps me awake.. I decided to have a look on the web for a few answers.. during my investigation i came accross Lupus.. when i read some of the symptoms i was very shocked to notice i had some of the sysmptom.... Im 29 years old and have has 19 unexplained misscarrages, also, I cant use my hands to peel vegetables as they lock up.. I have very poor circulation to the point my hands got numb when i brush my hair or do makeup.. i have bad ashtma, when i get colds they turn into flu then into bad chest infections.. ive had pneumonia twice because of this and had a number of hospital admissions..I also suffer from recurrng UTI's, where i end up in hospital. also, I sleep as much as I can, I can sleep 16 hours easily if i have no reason to get up.. I never really thought of putting all these symptoms together, so I went to my doctors and asked about lupus, but he just brushed it off and said it was very complicated.. Am i going crazy, can anyone offer any advice.???

11 Replies

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  • Hi,

    It sounds like there is something unexplained going on. It could possibly be lupus. One of the best ways to get your GP to consider lupus is keep a diary of all your symptoms. If you have experiences a few of the more common symptoms, especially if they were at the same time, then your doctor should certainly be considering it.

    If you'd like I can send you one of our free information packs about lupus? It might help if you take along a leaflet to your GP to discuss with them. Ask for relevant blood tests, If they are unwilling then I would advise you to see a different GP.

    Let me know if I can help in any way.

    Paul

    LUPUS UK

  • Thanks Paul that would be fantasic! :)

  • Send me a private message or email paul@lupusuk.org.uk with your address and I'll send one out.

  • I found going to a different GP made all the difference and insisted they refer me on to rheumatology. You have rights as the patient so assert them and best of luck. The leaftet from LUPUS UK is great and if you are diagnosed their DVD really helped me and my family understand what was happening. Good luck! xx

  • what dvd is this kate i would like my family to try and understand what i do through

  • Thanks Kate.. Ive spoke to my doctor today (maybe i hit a nerve yesterday?) he has said that the primary car trust do not test for this sort of thing, god knows why??? he has however ordered me to have some blood tests done? think its ANA or NAA or something like that?? So fingers crossed I may be getting somewhere at last.. Not quite sure what these are but he said this will tell if i have it or not.. I thought that there were a number of factors, not just a simple blood test? Hey Ho it a start i guess..

  • Louber it will be for AnA be warned that they don't always come back positive and you could be left disapointed push for the Rheumy referral I only got diagnosed eventually when I was extremely poorly last July and I am only now getting to see a Rheumatologist again that I am finally feeling like I am getting somewhere, I also took part in a research study that will see if there are any links and it was picked up when doing the initial tests to see if I was well enough for the study that there was some inflamation around the joints.

    Good luck where abouts in the UK are you located?

  • Hi louber

    Agree with all that has been said. I have had lupus & fibromyalgia for 3 years. When I was at my worst my ANA was negative, now 3 years later it shows as positive. I have also recently been suffering with very painful knees. I can go for ages without it then my knee pain comes back day and night-this time I put it down to an hour of sunshine in a park despite having factor 50 on. Again when my asthma is out of control I go on to get chest infections. I would ask your GP directly for a referral to a rheumy - after all it is you that is suffering and not them. If you have no luck change GP. Can you not take someone with you for support when you next go -you are not going crazy!! Good luck.

  • Thank you all for your comments, much apreciated.. Feeling really unwell today

    :( my whole body is shaking uncontrollably with no temperature, not sure if this is from antibiotics im on for UTI... all seems to be going down hill at the moment! Sat at work in the back office, cant really do much else..... tinkerbell im in leicester :)

  • I louber - I can sense your frustration! It is so hard to concentrate on work too, when you are feeling like a zombie....

    Here is a website I have given to others: nhs.uk/choiceinthenhs

    People criticise our present government, but they have improved the choice we have concerning referrals, and even choosing our GP, if we are not happy with the (lack of) help and care given. Sounds like yours is not too sympathetic! You can now be referred out of your area (and transport can sometimes be provided by the hospital if you are not mobile yourself ).

    Hopefully, the blood tests will show up something - to start an appropriate treatment plan for you. Take Care,

  • HI Louber

    I am also in the Leicester area. I am lucky to have a brilliant GP who did listen to me and recognised the need for blood tests that confirmed diagnosis. I am under Dr Francis (rheumatologist) who has clinics at both the General hospital and the Royal. He is extremely vigilant and provides excellent care. I was very poorly at diagnosis with signs of kidney involvement but after two years am clinically doing well although far from symptom free. Maybe having a named consultant to take to your GP will make a difference, I don't know.

    If you need a local contact I'm here!

    Take care

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