Help please

Hi everyone, I am new to the site and was wondering if I could get some advice please.

I am currently undiagnosed (hoping to be in July) my bloods came back positive and I am suffering terribly with joint swelling and pain especially in my hands and I am constantly tired, today I noticed a large amount of hair loss for me.

My rheumatologist tried to discharge me back in march with no treatment but I managed to get him to do more bloods as my last ones were done in June last year and they r the ones he is looking at so waiting for results from new ones. I have had x rays and ultrasound scan done and they said there were only slight issues so now he think I am just making it all up.

I don't know what to do.

Thankyou in advance

19 Replies

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  • Hi. I can tell you this, lab tests don't let. That's the way the can look on the inside to find out what's happening all over, inside and out of the body. The symptoms you're describing are signs of lupus. The labs will tell the rest.

  • Thankyou for getting back to me, I have researched it and that's what it sounded like to me but for u to say it too makes me more determined to push for a diagnosis instead of discharge. Just want something going now, ibuprofen aren't helping anymore and that all I have been told to take x

  • Lupus tests can come back false negative, saying you don't have it. Happened to my husband until he was so sick went into hospital. Now he has many immune problems and is well documented but he went through hell. I do want to add if you are married or have a close friend who can attest to your problems, bring them to your next visit so the doctor can here from someone who can say what you are saying they see. Good luck!

  • So sorry you are suffering so while waiting for a diagnosis. The doctors can sometimes be callus while you are being worked up especially if your bloods don't match your symptoms. Many of us have been where you are. Keep up the good work making them listen to you. It took years for them to diagnose me. I have to say I thought I was a little crazy at times thinking I was depressed or just lazy because I was so fatigued all of the time. It was quite a relief when I finally got diagnosed not because I wanted to have a chronic illness but the do make you feel as if you are a hypochondriac or malingerer. You have definitely come to the greatest site for advice and support. The best of luck to you in your journey.

  • Thankyou for replying. It's awful isn't it, I have 2 small children age 3 and 4 and I just don't have enough energy to do everything they want to do they are so understanding tho and know mummy is abit poorly but with the youngest one having medical issues too it can be very draining.

    I just want him to listen and try and help me live my life to the best I can for my girls xx

  • This website has lots of great information that you can download about lupus and what to expect at appointments etc. Keep a diary of your symptoms, take pictures of any swollen joints or rashes for appointments, and be persistent with the doctors. I'm glad you found your way to this website. I hope you will find it as helpful as I have. Xo

  • Oh that's a brilliant idea Thankyou for that I shall do, I have kept the hair that came out to show the consultant as I can't believe how much it is. Xxx

  • Hi susielouberry

    So sorry to read what a difficult time your having with your own heLth and your young daughters too!. Must be really hard. I'd just like to say that as you've got positive bloods and some issues from scans then the Rheumy in July should not dismiss you!. Joint pain is one of the main symptoms for these immune illnesses. It can be a long road to a diagnosis however but what he should do is keep you under review as symptoms can change quickly . You were smart not letting him discharge you in March. Best of luck for July, let us know how you get on and I hope your little girl is better soon. X

  • Thankyou for replying, sorry I'm only just getting back to u iv been dealing with my daughter so I do apologise. The last couple of day have been awful for me too with pain in my hands and legs and ibuprofen just aren't helping anymore :-( x

  • Hi susielouberry

    It's tough waiting for appointments in pain!. As your scan and X-rays have been done, just blood results needed, you could try for a cancellation by ringing the Rheumy clinic!. It's worth a try to bring it forward. I've managed it on occasion. Do hope your daughter is better. X

  • Had bloods done too huni and were told they were positive but still won't treat me :-(

    Might give it a try just panicking now that he is going to try and discharge me like he did last time.

    Thankyou she's having a good day today xxxx

  • Hi susielouberry

    If you can you mustn't let him discharge you as your bloods were positive again!. He should be convinced that you need treatment with those and your symptoms!. Best of luck. X

  • Thankyou Hun I shall try my best to not get discharged and fight for some sort of treatment xx

  • Hi Susielouberry,

    I'm sorry to hear that you have been struggling to get a diagnosis for your symptoms. Good luck with your next rheumatology appointment. If you need any tips on preparing for it you may find our article here helpful - lupusuk.org.uk/getting-the-...

    We also have other articles on our blog that provide tips for some of the other symptoms you have mentioned;

    Pain management - lupusuk.org.uk/pain-managem...

    Managing fatigue - lupusuk.org.uk/managing-fat...

    Hair loss - lupusuk.org.uk/coping-with-...

    If you need more information about lupus and how it is diagnosed, you can request or download one of our free packs at lupusuk.org.uk/request-info...

  • Oh that is brilliant thankyou so much I shall definitely have a read of those for some more advice

  • Hi there. The advice you've been given is entirely right - you mustn't let them discharge you. My bloods fluctuate wildly all the time and have done for nearly 30 years. Just because they might be clear on the days that they draw the blood does not mean that I haven't been struggling during the times inbetween. Antibody tests are only part of the evidence and mine are negative more often than not but I have other 'pointers' that make it clear that I have an ongoing auto immune disease.

    I have 3 children and it can be so hard to when you have to put a on a brave face and carry on as normal for them. I have ended half term completely exhausted from 3 consecutive days out .

    Good luck at your forthcoming appt. Clare x

  • Hi Clare. Thankyou for your advice, can I ask what other pointers do you have? As he thinks I'm making mine up.

    It is so hard with children isn't it, mine don't understand as they are only 2 and 4 bless them xx

  • My pointers would be: malar rash, photographs of intermittent joint swelling (often very significant but almost never present at appointments!), very low white blood cell count including neutropenia, Anemia ( this can be caused by other things so is non-specific), intermittently low C3 and C4 (complement levels are typically low in lupus and related CTDs), intermittently raised ESR ( but never raised CRP which is the usual marker of inflammation) and now respiratory issues which are linked to the lupus. I was diagnosed many many moons ago, at my first appt but I have since had my dx reviewed by a lupus professor and, despite being symptom free with normal bloods at each appointment during that 3 year span, she still was sure that I had lupus (or a subset of).

    I had a positive ANA 2011 - 2013 but that is now negative again despite my overall blood picture being much worse. I can't explain that!

    Hope this helps a bit xx

  • First, go to your primary, tell them what happened. You need as many tests you can get. Look up you symptoms, don't think you have them until diagnosed. Some diseases will show a false negative which happens to my husband all the time, it is ignored now since his disease is for life and when you talk pain, he takes it like the Marine he is.

    Rest as much as you can. I have many of your symptoms and I thought the diets of saying one is making it up was over. I fought for 5 miserable years to find a doctor who diagnosed me and saved my sanity

    Look up websites in your area or close and see if any doctor ops out a few times as being kind, you just want someone to see what they can do for starters. If you are asking for pain meds, and I am not saying you don't need them, don't ask for an opiate since doctors usually hate that since the DEA has gotten so strict. Go on boards like this, auto immune boards are a great place since there are a multitude of auto immune problems.

    Good luck, I probably wasn't much help since I will never tell anyone what I THINK they have. Hope you find someone who will help you. Blessings ❤️

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