one minute its lupus next minute its not...help/advice?

[LULU85]

hi everyone

I had a frustrating rhuemy appointment last week and really looking for advice as what to think?

in Feb I saw the rhuemy and they were definate I had lupus....my understanding its a diagnosis not given lightly.

fast forward to last week.saw a different doctor who said its not lupus as I don't auto-immune conditions. firstly I have graves disease and under went a thyriodectomy so why did I have that if I don't have auto-immune condition? she tried to fob my symptoms off as depression....I am not depressed.

last time my Ana was checked was about 6months ago and it was weakly positive with a speckled appreance. all other bloods are normal.

symptoms I have or had before starting azathrioprine and plaquinel are

extreme fatigue

joint pain

muscle pain

mouth blisters

molar rash...this has been written in my notes

fingers changing colour in the cold

livedo

numbness and pins and needles

brain fog

low white blood count which doc told me was due o the disease not meds...this was at Feb appointment.

the rhuemy last weeks said how do I no the tablets have stopped the joint pain and it hasn't just gone? what do I do then stop meds to find our? seems a coincidence that its suddenly vanished when on medication as had it 18months beforehand and nothing would shift it.

obviously I'm concerned I'm taking medication and don't want to if don't need to but also worried how 5 doctors who came into room in Feb said its lupus then one last week said no.

what would u do? is it. likely with all other bloods been normal? I just want to know what I have.

sorry for long post

lulu xxx

[LULU85]

forgot to say I get really bad migraine where I'll lose vision in one eye

[overnighthearingloss]

Maybe its akin to the ATOS Lourdes effect.

If they say you havent got it you have been cured and can save oodles on the benefits bill

[Tigerlily4]

Heavens, they do seem to be messing you around Lulu! If a Rheumatologist feels you have lupus then you almost certainly do. Yes, it's not a lightly-given diagnosis and sounds very much like (from the symptoms you describe) that is what you have and the speckled appearance of ANA would tend to confirm this. What a very strange thing for your Rheumy to say (ie. how do you know the medication is working rather than you're not in remission)! Sorry I don't have any advice other than to ask your GP to refer you to a Rheumatologist who specialises in SLE as the one you're seeing now is clearly pants! You may not be aware that you can opt to be treated by anyone in UK, including at the Lupus Clinic at St. Thomas' Hospital in London should you choose. St. Thomas also have a list of lupus specialists all over UK so that might be a good place to start. BTW, with the onset of my SLE I suddenly began having migraines which cause me to lose sight in my left eye for varying periods of time so this is not unusual, although terrifying when it first happens.

[LULU85]

thanks for the replies.

tigerlilly do you have to pay to go to St Thomas's? do you need a gp to refer you there and can you also carry-on going to your local hospital? sorry for all the questions. I live miles away from london and have two small children but I'll travel to get the right answer if that makes sense. if you have to pay to be seen then I won't be able to afford it. I feel like I'm stuck in a nightmare I can't get out of xxx

[MaryF]

Hi there, it is really worth getting referred to St Thomas's I did, I also live miles away, they need to clearly look at your lupus and also perhaps Hughes Syndrome as well. Best of luck. Mary F x...

[Hidden]

Been there!!! Diagnosed in Turkey with Sle and suspected Lupus anticoagulant, on lots of meds even had light chemo - once a month for 6 months as they thought I had CNS involvement. Anyway, my rheumy here thought it sounded more like MS though Id been thoroughly investigated for MS first, so they sent me to a neurologist who was a mini Hitler. He concluded that he didn't think I had MS or Lupus and that I should consider depression - I actually swore at him for which I immediately apologised but like you, I'd had so much treatment and even given up my great job and home in Turkey to move back to the UK for depression!!!! He wrote a 4 page report on me, opening with depression so which doctor is going to read any further, he mentioned how accommodating he'd been yet I swore at him, neglected to mention the apology. I met with my gp who said "you're not depressed" and was happy to support me. I sent a letter in reply to the neurologist pointing out very where he was wrong especially with regard tobhiz having been accommodating, I cc'd my gp and rheumy. In response my rheumy referred me to St Thomas'. Btw I go once a year to St Thomas' and once a year to my local hospital rheumy, so I'm seen every 6 months, more often to both if needed.

I had to wait 8 months for an appt, in that time I tappered off my drugs as I couldn't see how they were going to get a TRUE picture if I was still taking prednisolone, aziothyaprine, warfarin, aspirin........It was a terrible 8 months as Id told friends and family what the neurologist had said and they started to doubt me too, I hated him. Well after just 45 mins with Dr DeCruz at St Thomas' I got my diagnosis purely based on my medical history and not my physical exam, I went into a state of shock I think after waiting so long. Just 45mins was all it took. My rheumy referred me back to St Thomas' to see a neurologist when I needed an MRI due to my differences of opinion with my local one. Still harbour an intense dislike for him.

To round up. STICK BY YOUR GUNS, BELIEVE IN YOURSELF, WRITE A FEW LETTERS AND DEMAND SOME RESPECT. THEY ARE NOT GOD, THEY MAKE MISTAKES AS WE DO. STICK LUPUS LITERATURE UNDER THEIR NOSES.

Go get 'em, lulu. Any help needed with letters give me a shout, honestly. Xx

[Tigerlily4]

Lulu - you don't need to pay to see someone at St. Thomas (it's an NHS hospital) but, as I said, they hold a list of Rheumatologists in England and Wales who specialise in SLE so you may find another, better consultant reasonably close to where you live. In all cases (even if you opt to see someone privately for speed initially) you need a GP referral. The list used to be on-line but I can't presently find it. I'd phone them and ask.

[LULU85]

guildford- thank you for telling me your experience makes me feel less alone and your offer for help with letters is appreciated.

tigerlilly - I did find a list of the top rhuemys in my area and the one at my local hospital is the doctor who gave me the original diagnosis of lupus. my next appointment is in 6 weeks and I'm going to mention about what was said at the last appointment and also ask to see him. 4doctors looked at my records and diagnosed it so yo would like to think if 4 have decided its lupus then it u

is.

[LULU85]

sorry for errors on touch screen and doesn't write what I type lol

[caldecote]

Hi Lulu, ive had problems with diagnosis also so I did a diary of symptoms and a photo diary they couldn't but agree! Its so frustrating its taken me 20 years to get a diagnosis. I too get horrific migraines, irritable stomach, molar rash, allergies to medications with whole body rashes, sun sensitivity, chronic fatigue, raynaulds, sgyeons, degenerative discs, bilateral carpal tunnel and pins and needles etc. believe in your self at the end of the day we are the ones left to face this, after serious consideration I am going to complain about my consultant, as he has not been on the ball and ask to change consultants. He has lost my pension paperwork, forgotten about my appointments ( so after a year of no disease modifying drugs as my white blood cell count was so low, not sent letters to my doctors for change of meds, not told me or my doctor why I had to have loads more tests done and mri of my liver, he also was not replying to urgent phone calls from my gp. In our area half of the consultants do private work and I think that they are over run. I worked for the nhs so I do understand but too many mistakes and it really affects us. On a more positive note I take co enzyme 10 for the migraines it also helps with the heart as I have hypertension. Oil of primrose as its a great antimflamotory especially for my costacondritis, complex vit b has really made a difference with the tingly nerve endings as has elmis massage oil. I now also take 1000 mg of vit c and my immune system is a lot better I still have a low white count but im not having colds every month. Research your symptoms and like someone else

has mentioned quote if need be I have photo copied before, I used to do this for patients when I was hitting a brick wall.