baba

Sorry you are having so many problems.

Ask to be referred to someone else for a second opinion. Lupus is not diagnosed on blood test results alone, it is only part of the picture.

lupusuk.org.uk/bsr-guidelines/

academic.oup.com/rheumatolo...

Shorthouse

I get numb feet too .mine come and go .its got a lot colder .i think this makes a difference.keep your feet warm .hope this helps x

Paloma25

You need a rheumatologist you can trust, and who understands lupus. The ACR guidelines were developed to make sure researchers were using the same criteria in their studies, not for diagnosis, so physicians need to take clinical symptoms very seriously. And you do not need to feel uncertain of your doctor when lupus already makes day to day life so uncertain. It would seem reasonable to say you want to see someone else, whose diagnosis is consistent with the lupus clinic and with your experience, and to insist on that. Bring a calm but firm friend or family member for support. Good luck, and I am so sorry you are going through this.

Melba1

Sorry you’re going through this 🙁 I have had lots of lupus symptoms over the years but have found one of the most worrying being times when I’ve had loss of sensation like this. It feels scarier than other things because I worry it will progress. I know we’re all different but if it’s any reassurance I have had this several times now as part of a lupus flare and the normal feeling has always come back (fairly quickly on steroids). I’ve seen lots of different people for an explanation and received many but probably the most likely (for me) was a lupus specialist who said it was just one of those things that happens to many of us with lupus (there’s a study, Cruz as author I think, who noted that 1/3 of his lupus patients had these sensations/ loss of sensation).

Don’t let them refer you back to the dr who didn’t believe you. These symptoms are hard to ‘prove’ with tests as they are often the small nerve fibres and you shouldn’t feel disbelieved. Maybe find out the name of a good rheumatologist from staff/ patients on here? If you let us know where you live, somebody will probably be able to advise. I’ve learnt to check carefully before seeing anybody new as it’s so important for us to have drs who understand our disease (and listen!)

X

kingsnorth

Hi Wrexlu l have lupus and sjogrens l was initially told l do not have either l live in Kent do you have a positltive ANA. I paid to go private and saw Professor Graham Hughes who diagnosed me with both l was referred to louise coote until they discharged me after 3 years because l was stable. I now see a local rheumy. You need to change consultants ASAP one who recognises you have lupus. I have recently come out of a flare my feet went numb and had pins and needles. My blood results were normal and didnt show l was flaring. I had MRI as well as it was suspected l had MS but fortunately l didnt it was a flare.

Melba1 in reply to kingsnorth

Hi kingsnorth, did you get an explanation for your numb feet and pins and needles other than just part of a flare? These symptoms seem the start of a neuro- flare for me but I have been given lots of different reasons from paralysing migraine to systemic inflammation from a flare to fibromyalgia (which I know I don’t have) to carpal tunnel to autonomic dysfunction.

I have learnt that these symptoms seem to come before a flare for me and I increase steroids (on the recommendation of 2 rheumys) but a neurologist said that steroids won’t improve it (but I think they’re wrong because it does every time!)

Did you treat yours? Did those symptoms come before or during a ‘normal’ flare for you? It seems to be this type of symptom that lots of us get yet we all get different explanations.

X

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kingsnorth in reply to Melba1

Hi Lucy l was tested for fibro but told l dont have it. There was no explanation for my symptoms l was convinced l had MS especially because of numbness and pins and needles. I paid for an MRI. My neurologist wrote to my gp saying there was no explanation for my symptoms. My rheumy was reluctant to give me steroids as my blood tests didnt show inflammation but l took some anyway as l had some in the cupboard only 3mg a week. I think it helps me as a maintenance dose and my rheumy agrees now. Because there was no explanation for my symptoms l became anxious and that made it 100% worse as you know lupus causes anxiety. I still have symptoms but not as bad. I take plaquenil which helps inflammation. Ask your gp to refer you back to London and start again especially as they diagnosef you in the first place. Louise Coote has now closed but St Tomas's deal with lupus.

Chris

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AgedCrone

Search around to find a lupus specialist that you feel you can trust and ask your GP to refer you ......he has a duty to do this.

Everybody with an autoimmune disease should be seeing a consultant in their particular specialty.

A lot of GPs try to manage these conditions and that can only be to the detriment of the patient .

Wrexlu

I have seen my GP this morning and getting a referral to a better rheumatologist. Thank you all for your posts. They have helped me greatly. Lucy xx