Blood tests negative apart from ANA

[ShonaGreen]

I’ve posted a few times and appreciate all your helpful responses, so thought I would post one more time! I had follow-up appt after blood tests, but not with the lovely Rheumatologist I first met, instead it was with her registrar who wasn’t very interested in me now that all my tests were negative apart from ANA which was 1:640, just like last time I was told, but don’t know when that was, and he said it’s not that important.

I was originally referred by my GP, he thought that sores on my hand looked like vasculitis, hard to get a good picture of them. Since Christmas I’ve had 3 episodes, all in right hand, where fingers swell up and get red/purple sores with purple/brown spots, very sensitive, after a while look like bruises, lasts for a few weeks at a time.

I’ve had Raynauds for a few years, mainly on toes which seem to stay blue these days, but hands not usually affected. Luckily the Rheumatologist saw my hand on a bad day, where I couldn’t bend it or make a fist, she thought I had livedo ritacularis too. She seemed to take me seriously.

Anyway, registrar said that as all my bloods are fine, then there’s no way it’s vasculitis, especially as ANCA and MPO were negative and I’ve just got Raynauds. They might do the nail fold capillary test but not sure if it’s needed. When I said that my hands remain bad for weeks and nothing helps, and mentioned what my GP said, he laughed and said that I mustn’t know a lot about Raynauds!

I then mentioned that my nose had been bleeding, and had sinus pain which I don’t usually suffer from. Also that acid reflux worse, experiencing heartburn, choking again on liquids, heavy chest etc. He said chest x-ray all clear, it would show if there was a problem, take more medicine.

I felt silly by the end of the appt, didn’t get to say what I wanted as felt like wasting their time. He did mention there were notes on my file to consider Undifferentiated Connective Tissue Disorder if blood tests inconclusive. But when I asked more he said that he didn’t have the info.

I guess as all the blood tests were negative that it’s likely to be Raynauds causing the problems? But I thought I’d ask if anyone else has been in a similar situation? My hand is better now, but I don’t feel right, loss of appetite and lots more tired than usual. I appreciate your help.

[ShonaGreen]

Hard to get a pic with the spots but this is a recent one, lasted for over a week.

[lesleyg]

Hi Shona,I’m sorry you were made to feel silly, but it’s just something we seem to have to bear. A very nice doctor told me to slip different diseases into the conversation - I would be asking about the possibility of Behçet’s disease (a form of vasculitis). Keep a diary of any odd symptoms and if possible take photos. Lesley

[ShonaGreen in reply to lesleyg]

Thanks lesleyg , that's a good idea. I've read about Behçet’s disease. Whilst I had thought about asking for a referral to a vasculitis specialist (I've spoken to the helpline too), I feel like I'm wasting people's time now that I know about the negative blood tests.

I guess if it's vasculitis it would become more obvious in time. So for now I think I should just focus on getting better. I'm used to being very active and running all the time, now my arms and legs ache after a few mins of exercise, it's like I'm slowly losing my energy and stamina too, and that's getting me down. But onwards and upwards, I'll keep on taking the photos and hopefully things will improve!

[AmyS1]

You can definitely have ANCA vasculitis with negative bloods. Nose pain should not be ignore.

[AmyS1]

Are you aware that a positive ANA may means you have SLE??

[ShonaGreen in reply to AmyS1]

Hi AmyS1 they tested for antibodies for all the main connective tissue diseases including lupus. Seems that although the ANA was a high positive, not much use when negative for specific antibodies 😑

[AmyS1]

Ask the Dr some questions has he ever seen a case of vasculitis. Most Dr's will not see one case in the whole of their working career unless they are at a vasculitis centre.

[ShonaGreen in reply to AmyS1]

I really wish I had done that, when he laughed at me and said that no one ever thought I had vasculitis, it’s either Raynauds or chilblains and I should have known that, I nearly walked out of the room. If I get another appointment, then I’ll take someone with me next time.

Luckily the nose pain just lasted a week and not a problem now so maybe just one of those things!

[Mooka in reply to ShonaGreen]

Please don’t think you are wasting their time. I had ‘unremarkable’ blood test results. Rheumatologist, who specialises in vasculitis sent me to an infectious disease doctor who suggested I had vasculitis. My rheumatologist still wouldn’t have it until my GP started booking the further tests suggested by the infectious disease doctor. The rheumatologist then referred me for a kidney biopsy and the rest as they say is history. I had one registrar who made me feel foolish several times after I was diagnosed in the end I refused to see him again. Do take someone with you next time - the bullies tend to pipe down a bit then. Good luck.

[ShonaGreen in reply to Mooka]

Thank you Mooka I’m glad I posted as you’re all being so kind. I’m starting to feel better about the situation as I’d been feeling a bit lost to be honest.

Can I ask if you continued to feel unwell whilst you had these tests? As my hand is better and no more no nose pain, I’m thinking I should wait to see if I feel bad again before going back to the GP to ask for referral to a vasculitis specialist. Although I don’t feel like myself, I’m not as ill as I have been, so hoping I might just get back on track I guess!

[Mooka in reply to ShonaGreen]

Yes I was feeling very fatigued and had nausea amongst other symptoms that came and went. It took 19 months from first feeling ill to getting a diagnosis which isn’t unusual for vasculitis.

[EGPAGuy]

Hi Shona.. sorry to hear about your troubles. I have never had a positive ANCA test and its a poor indicator generally and I have EGPA ..dont ignore sinus issues or other symptoms. I was let down badly by the local hospital with diagnosis but got my GP to refer me to Addenbrookes . Dont let them bully you..a neighbour also has EGPA (what are the chances !) a diagnosis reached after 6 years of unnecessary suffering and being made to feel stupid. Get your GP to refer you to a vasculitis specialist..this community can give you specific names ..I have a couple in London at St Thomas but if you can get to Addenbrookes in Cambridge then would recommend you go there.

[Goldsmith1 in reply to EGPAGuy]

Hi I read your post above would you mind giving me the names of the vasculitis specialists at St Thomas hospital? I am a patient their and one of the respiratory consultants has diagnosed me with grandulomatosis polyangiitis as well as pseudomonas aeruginosa. I will be having further tests in the lung function clinic on 17/06 and more blood tests on 21/06 when I have my next 4-weekly infusion of Vedolizumab in the IBD infusion centre. I really don’t know if I will require any treatment, I thought my respiratory issues were the result of side effects from the infusion having read the leaflet. Now I find out I got another autoimmune issue! I just wondered who the experts are at St Thomas? I already had an emergency appointment in ENT and they scoped my nose and they said my sinuses are not involved! I am surprised at that! Thank you for your help!

[EGPAGuy in reply to Goldsmith1]

Hi ShonaSorry I am a bit late. Right the people to ask for at Guys and St Thomas are Dr Jackson or Dr David De Cruz..their names were given to me by Prof Jayne at Addenbrookes in case I didnt fancy the journey to Cambridge. I am happy to travel to Cambridge because at Addenbrookes the whole multi disciplinary team are also vasculitis specialists. Good luck with your journey. I believe Hammersmith hospital also have a vasculitis specialist but don't know their name.

Best Lev

[Goldsmith1 in reply to EGPAGuy]

Thank you that’s wonderful I will look them up and see what the respiratory consultant thinks.

[EGPAGuy in reply to Goldsmith1]

Pleasure and please be pushy. I think my journey by comparison to others here has be eased by pushing to see a specialist and getting an amazingly fast diagnosis. I was misdiagnosed by the local hospital but by chance the condition they diagnosed was treated with pred so I got the right drug. They then discharged me effectively saying I was cured. On reduction of steroids all my symptons returned and my wife researched got names..my GP was great and referred me to Addenbrookes. Push to see a specialist and rule yourself in or out asap. Best Lev

[Goldsmith1 in reply to EGPAGuy]

I agree and I will try to do just that! The respiratory consultant at Guys has been excellent he has personally phoned me now 3 times to check up on me. I feel I am in good hands certainly at the moment. My local hospital also missed an important diagnosis of Antiphospholipid Syndrome for which I inject blood thinners daily. I am under Prof Hunts care for that and also have a fab Gastro team. What worries me is who will be overall in charge of my care (apart from myself) so all these drugs I am on dont work against each other. I will ask the questions at my review on 23/06 and take it from there. Will ask for Mr Jackson and also Prof De Cruz. Thanks again for your replies! And I truly wish you well. x

[EGPAGuy in reply to Goldsmith1]

Last thing my wife has advised me several times to talk to the chemist as well as they are usually fully up to date on drugs and interactions and will write to and liaise with consultants and GPs. They have been helpful to me in the past and we all should use them more.

[Goldsmith1 in reply to EGPAGuy]

I have never thought of that! Thank you for this advice. Some of my medication is issued by St Thomas direct, like my anticoagulant injections and my vedolizumab, but I guess the pharmacists in St Thomas might be a good starting point.

[eh66]

I pushed my GP (I could barely walk and needed help standing up) into referring me to A&E rather than just having more blood tests. Whilst on an acute medicine ward, my initial diagnosis was reactive arthritis though they couldn't figure the underlying cause. Fortunately the rheumatology department were a little suspicious and did some more blood tests. Next thing I knew a consultant from the Vasculitis team appeared to check me over (a condition I had never heard of). I was scheduled for a kidney biopsy, followed up a by full treatment programme. I am now in remission. Bottom line be pushy.

[AmyS1]

I nearly gave up!! ( I would not have survived my vasculitis if I had not pushed for diagnosis and treatment). Now 8 years after my initial symptoms my health is much better. People die from undiagnosed vasculitis. It is very hard but maybe see Prof De Cruz privately. He will take the time to do a careful history. You will have to travel many miles for treatment. Your swallow problems maybe significant there are 26 different types of vasculitis!!!

[M3LZY]

I was told I had raynauds via covid.... only then to be told at a private consultation it was vasculitis. Pretty sure more is happening to me with weightloss and lots of other symptoms. My heart goes out to you ❤️