Shame you have to pay to get answers!

[honey67]

HI! Well, after months of trying to my GP(s) to take me seriously about my symptoms, I'm having to pay privately to see the rheumatologist I saw 5 years ago.

I've had horrible flares overs the last 6 months and anxiety....the GP would only treat anxiety and the symptoms are in my head! However, my rheumy listened to me, didn't make me feel stupid and will run lots of tests and if they are negative try and sort the anxiety for me, without making me feels stupid! Shame I have to pay over £1000 for all this to be done, but when you are desperate............

This morning I woke with the most horrendous headache, neck pain and back pain, and couldn't get out of bed till I'd had painkillers and slept for most of the morning.....this can't be right or in my head! My neck has now stopped complaining and my back now feels like it's been punched!

Hoping bloods will show something and then will be able to go back to GP and have a word!!

Done! xx

[Ghogh77]

Hi

It's a stressful period when no one listens. I do have good care but it is hot and miss depending on who I see. I'm considering private myself as a back up and wondered since you paid £1000 this isn't now an expensive option monthly. Does anyone know any private health insurance which doesn't hike the prices way up for lupus?

Hope yours is resolved soon xx

[honey67 in reply to Ghogh77]

Hi Ghogh, thanks for your reply. The appointment was £180 the rest of the cost is for blood tests!

Debs x

[Jaxqueline]

Terrible GP! Can't you switch? I'm fortunate to have a very good GP but he does admit he knows little about SLE.

[honey67 in reply to Jaxqueline]

I've tried them all Jaxqueline! One GP believes me but won't do any tests, the other says it's all in my head, etc, etc!. At least when I get a diagnosis, it will be on my records.

xx

[Gillyg]

To get my first diagnosis 22years ago and after 6 years I gave in my Gp offered me the chance to see a private doctor. Best thing I did it wasn't right but I saw a rheumatologist and with in no time at all was diagnosed with SLE, never heard of it before just grateful the label of I was imagining it was taken away. After seeing him 3 times he put me on the NHS and I saw him there which was good of him. I have had to pay for a few things since when once again no one listens and you get desperate. Just going to back in to have accupuncture done for pain not a lot of pin killers do much I can't take codine based products. I ill pay for a few sessions and hope it works without too much expense. Good luck. X

[Jaxqueline]

Fingers crossed for your diagnosis. x

[honey67 in reply to Jaxqueline]

Thanks

[Petrof]

I was also diagnosed only through a private doctor - thankfully at that time a had BUPA insurance, so I had lots of tests done within a very short span of time. Everything was negative, so they were about to fob me off with IBS but in desperation I told the gastro that I am sure that is not the case and pointed out to him that for many years I have raised ESR. He looked at it, agreed and requested another test - rang me home few days later, that is looks I have lupus (I had raised ANA, which happened only that time,otherwise my levels are normal).Have been diagnosed at the age of 47, although have been seeing doctors since teenage years about feeling unwell, with no success. My mother died from lupus complications but so shortly within the time she was diagnosed that I never learnt anything about this disease and it did not dawn to me that I could have it too).

After the diagnosis, I was transferred to NHS - Louise Coot lupus unit on my request.

I do hope that everything will be clear soon for you. It makes quite a difference once you know what is wrong.

[Loveofpets]

Hi to you all, I can't believe what you are going through or I must be so bloody lucky. 8 years ago I went to the doctors told her all about my symptoms which I had listed so not to forget anything. As this was the first time I had seen her she explained what she specialized in at the surgery and at Plymouth hospital and that she was a rheumatologist. So the first thing she did was to book me in for a full blood test and to see the physiotherapist at the surgery. Three days later she called to tell me I had lupus. Which started the ball rolling for me to see more specialists. 3 years later my husband and I moved and booked are selves into our local doctors to my luck the doctor I had to see was also a specialist in connective tissue diseases. I think all surgeries should have a DOCTOR who specialises in CTD or rheumotology. Love to you all and take care Heather x

[ebril]

I must be lucky even though my GP knows nothing about lupus because of the osteoarthritis they sent me to a rheumy specialist who diagnosed me in the first visit so I'm one of the lucky ones I guess x

[Petrof]

Just to say that I have had a terrible headache, neckache and backache as well for quite a few weeks, also fevers. I work in a school and a few of my colleagues and students had similar symptoms. They got better in a few days, it took me weeks, so I wishfully hope that it was viral infection that flared up lupus as well and that is now slowly subsiding without hopefully anymore medication.

[honey67 in reply to Petrof]

Hi, lets hope it was a viral infection and you feel better soon.

x

[tintin49]

i got diagnosed straightaway within days to be honest. i was really shocked never heard of lupus and very scared. its not been good getting the diagnosis and i am not really happy about the treatment its ghastly and very hit and miss.

i also believe that if you try and get answers i.e a second opinion this can cause major bad feelings with your main carers.

horrible disease,hard to diagnose,no cure, no sympathy just a struggle all round. it alsomakes you very poor and very depressed rant over lol

[stretch in reply to tintin49]

well said tintin.most of them are quite unconcerned that we are "losing life" .....only those who suffer it can comprehend it.

[honey67]

Hi tintin, sorry to hear your not great and the treatment is not good. I can't take most painkillers, anti-depressants, etc as I'm super sensative to them, so I'm not sure what is going to happen if I'm diagnosed with lupus/firbro/etc.

Wishing you good luck,

Hugs x

[mstr]

Hi Honey, It certainly does sound like you are having a flare up - I hope the bloods come through for you and that you get the support you need x

[honey67 in reply to mstr]

Thank you. I'm definitely having a flare of something I don't want the bloods to show anything, but I also do, if you know what I mean!!

x

[mstr in reply to honey67]

I do exactly because then it reflects exactly how you are feeling. Would be interested to know how you get on x

[honey67 in reply to mstr]

Thanks, I'll let you know! xx

[Gerrish]

Hi honey. I was very concerned at your report of what you have had to pay to get medical attention for your condition and I have consulted Lupus UK on your behalf and drawn their attention to your plight. They would like you to contact them directly at Lupus UK HQ please (tel [phone], or email [e-mail]) and they will help you get your treatment under the NHS without having to pay for it! That's what we have a National Health Service for! Good luck, Gerrish, Dorset Lupus Group

[honey67 in reply to Gerrish]

Thank you for your concern and that's very kid of you. Well, I've had the bloods done yesterday so now committed to paying for them! Hopefully the rheumatologist will refer me back to the NHS when he has the results.

[stretch in reply to Gerrish]

nice one Gerrish. i was in danger of assaulting these highly paid dismissive ignorant "payed to care" doctors....and if i had i would have been blacklisted and declared psychiatrict and would have been finished.that was years ago and psychologically i have not been able to contact a doctor ever since.

[tintin49]

i agree stretch it does drive you mad not sure which is worse the lupus or the dr's lol

honey i nearly did what you did and was quoted a lot of money that i had saved. but one of the nurses said that this private rheumy worked at my local hospital and i had around 12 lots of blood tests that all pointed to lupus . when i went to london bridge for second oipinion he redid all the very same tests all over agin and the came back the same with him adding a few more symptoms to my illness. that was the only difference. i was just too classic a lupus patient so a waste of money really to go private in my case. if you are borderline this may be necesary tbh.

to date it seems like my old gp has suddenly retired..will miss her greatly after 20 years. my new gp is really trying hard to help me and if i suugest something he will get back to me. not happy about being put on citalopran though makes me a bit odd (not that i need that lol). i am praying that i can manage the hydroxy as the thought of chemo stuff will kill my spirit. do keep us informed how you get along. its terribly difficult lupus with a lot of questions and no real answers x