Hello , I would be very grateful for people's thoughts on this. I have just been referred to rheumatology following a positive ANA test and symptoms that to me , point towards lupus. These include joint pain , eyebrow hairloss loss and burning rash which comes and goes over my face. Last week I suddenly felt a pain/lump in my throat as if I was going to cry but didn't feel tearfull at all. The 'pain' travelled up the back of my neck and into my head almost like a head cold. My throat and lips were very dry and I felt spaced out. This lasted a couple of days then passed. My GP thinks anxiety but I disagree. Last night the exact same happened again and I still feel unwell today. I'm expecting to wait around 3 months for my rheumatology appointment. What I would like to know is should I just ride this out or go to A & E when I have these attacks ? It's very frightening. Thanks in advance for anyone's thoughts on this.
Should I go to A&E ?: Hello , I would be very... - LUPUS UK
Should I go to A&E ?
It is probably worth calling 111 and seeing what they think although I doubt it is something that is appropriate for A&E in the state most A&E departments are at present - but is there any chance of seeing a different GP tomorrow to see what they think?
Thanks for your reply. This is the second GP I have seen. The first one didn't take me seriously at all. When I told him my symptoms he asked what id been reading. Luckily the second one ran blood tests but im sure thinks I'm not as bad as I'm making out. My mum died of kidney failure after years of symptoms that point towards lupus but she was never diagnosed. I think I'll call NHS 24 for advice the next time this happens. Does anyone else get these symptoms? I'm concerned about CNS involvement.
This may sound like a very strange question but bear with me, do you suffer at all with acid reflux symptoms? Dependent on your answer, I will give you my experience, I will preface this, that my experience is nothing to worry about. What did NHS 24 have to say?
Hi not that I'm aware of but my throat certainly feels 'burned'. I had my gallbladder removed around 18 months ago. There were complications and I needed to stay overnight post op. The doctor didnt explain why . If I eat certain foods or fats my abdomen swells and face goes puffy. This feels like tonsillitis I used to suffer from a lot as a child. I can't understand why my GP can see no sign of inflammation. The scarey part is when it travels up into my head with a white noise kind of feeling. There's also a red (not raised) rash flushed over my cheeks. My husband has noticed a twitch below my eye sometimes which I'm not aware of. I feel generally unwell and haven't felt like this since I was a child. I haven't called NHS 24 yet. I will when I have my next acute ,'attack'. Thanks.
Have you been tested for thyroid nodules and/or Hashimotos (you need antibody tests for TgAb (Thyroid Globulin Antibodies) & TPO (Thyroid Peroxidase antibodies. Your symptoms sound exactly as mine and was positive on TgAb above 1000 (normal 0-80) you also get a positive ANA with Hashi's.
Then I had a thyroid scan and have loads of inflammation and thyroid nodules
I also now have suspected Lupus as one autoimmune condition seems to go with another
Hi I'm not too sure what I've been tested for tbh but thyroid and organ function tests all came back normal. I get lumpy swellings around my ankles and feet and am due to see an orthopaedic surgeon concerning a swollen lump that doesn't go down . I'll check out hashimoto symptoms, thanks. The strange thing is that although my joints/bones hurt they don't get stiff in the mornings and my fingers are fine. My GP feels there's something autoimmune going on but doubts it's Lupus. I've nearly lost my eyebrows and now this issue with the throat, neck and head. I'm 49 years old and these symptoms started around the time my periods stopped. This makes me think it's to do with drop in oestrogen. I'm scared that by the time I wait on all the different referrals , years will have passed and it will be too late the damage will be done. Thanks for taking the time to reply and I hope your lupus diagnosis turns out to be negative .
The antibodies for thyroid are specific, your thyroid function tests can show normal but you MUST get antibodies tested as I said TgAb (Thyroid Globulin Antibodies) & TPO (Thyroid Peroxidase antibodies.
Most people lose the outer part of their eyebrows with thyroid problems
Your TH1/TH2 balance goes wrong with hashimotos hypothyroidmom.com/autoimmu...
Throat could be nodules - I would definately check it all out
All these autoimmune things normally go hand in hand
Hi thanks for this. I've checked the symptoms of hashimotos and I do have a lot of them, including the irritability - my poor husband 
I'll be sure to ask the rheumatologist to test for it. I've went gluten free this last week so hope this will ease symptoms. It's all very scarey , Can u tell me if the throat pain comes and goes ? I had this last week then it subsided but returned again last night . Thanks.
Yes mine will be bad for a few days and my inflammation everywhere else happens at the same time as its an autoimmune flare, then it will subside and then re appear. Please remember they must check both antibodies for thyroid
"Gluten-free" is not a magic answer to illness - except coeliac disease.
If you use the gluten-free substitute foods rather than using the opportunity to improve your diet and cook everything fresh all you really end up doing is adding a lot of sugar and calorie-dense foods to your diet. Beware.
I'm not an expert by any means, but acid reflux, which I do have, can cause something similar, but not the same. One other thing might be, but not neccesarily, a reaction to a food. Took me ages to connect something similar with eating melon ( but not watermelon). Otherwise, sending a hug, and hope a GP can treat you with more understanding.
Hello. I've read your post and replies and you have some great advice already. I just wanted to add that when I was diagnosed with SCLE, a sub group of lupus, I had had an EXTREMELY sore throat for months. Along with my numerous other symptoms. It felt like I had swallowed glass and my throat was cut to shreds. I was sent for ENT investigations by my Rheumy ie up the nose & then swallow the little camera. The ENT Consultant said he couldn't see anything!!!! But I knew I wasn't imagining it. Like I wasn't imagining the rest of my symptoms. He said it could be silent reflux. Or lupus related. Once my lupus was being treated the sore throat died down. But it is always part of a flare for me. So lupus was the cause in my mind. I was lucky to get positive bloods and get a diagnosis, between October and November 2013. But with hindsight I'd had lupus since 2008. That big flare lasted most of 2013. So 5 years with increasing symptoms but no diagnosis or treatment. The average for a lupus diagnosis is unfortunately 7 years. So hang in there. Keep a record of your symptoms and how you feel each day, as we don't always remember everything and it will be useful for all medical appointments. Good luck.
Speaking as someone who had a 12 year career in the Emergency Department, from what you are telling me, I would suggest your symptoms would be triaged to primary care, i.e. a GP.
If you went to ED with the problems you describe you might be put in the queue to see an in house GP if the department has one and wait hours to see them.
If you attend the ED during one of these attacks I suspect that they won't do anything different to your GP. In fact your GP may be able to do more for you as most ED departments will usually only run a set of routine bloods and cannot refer you on as an outpatient to a speciality, they can ask your GP to refer you but they cannot refer you themselves unless they have a conclusive diagnosis.
It is really difficult to wait for a period of three months when you feel so ill but I think a GP really is your best port of call. Keep going back to them if the problem persists. If you have a date to see the rheumatologist I would suggest phoning the clinic and asking to be put on the cancellation list, it worked for me as I got seen two weeks later.
The Emergency Dept really is for life-threatening conditions or patients who have seen their GP and have deemed it necessary to be referred in. 111 can offer advice 24/7 so you have several options to try.
As regards to the burning throat maybe trying some gaviscon would be a good starting point. If it works then great, you don't have anything to lose by trying it.
Good luck and let us know how you get on.
GP's are the worst when it comes to Lupus, mine was dreadful and made me feel so belittled. Every time I visited because I was feeling unwell (this is before diagnosis) he made out as if I was lying and exaggerating. He told me "I definitely don't have an autoimmune disease". 8 years later... yes, I do have one! As for the symptoms, I wouldn't rush to A&E. As others have said, try calling 111 first, they can often point you in the right direction. If your throat problem gets worse, if it is very sore and starts to close up to the point at which you can't swallow, then visit A&E.
Hello again everyone and thank you for all of your replies. I thought I would update you as I've experienced another 'attack' through the night last night. I awoke with tingling and numbness in both ring and pinky fingers . This was emanating from my elbows. I had a buzzing feeling in my head that and also what felt like small electric shocks. I called NHS 24 and was called back within the hour by a doctor (GP I think). She told me that my own GP was so thorough in testing that there is absolutely nothing she can add. She said that apart from ANA pos everything else has come back absolutely spot on. She said that my GP was so thorough that if it were an exam she would score 100 percent. She told me it's a rheumatologist I need and that my GP has requested a prompt appointment and even said in the referral that I am a lady who rarely ever visits the doctor. I now realise I have a fantastic GP and feel so grateful to her. I wanted to share that with you. as I had stated that it felt like she didn't believe me.
Anyway I still don't understand my symptoms and to be honest I'm very scared. I go from fearing I'm going to have a stroke to thinking it could be a brain tumor. I feel it's definitely peripheral neuropathy but there's nothing more I can do until I get my appointment.
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