LUPUS UK
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No diagnosis yet

Just back from seeing GP to discuss letter from rheumatologist

I have most of the lupus symptoms:- photosensitive rash, joint pain, mouth ulcers, palpitations, night sweats, sleeping problems, hair loss, positive lupus anti-coagulant.

However because my ANA is negative and anti-CCP negative she is not convinced it’s Lupus.

I have an appointment next week with renal specialist as my kidneys are losing potassium and she wants their opinion on things also.

Is this the usual pattern of events?

Does it generally take forever to get a diagnosis?

So fed up with all this

11 Replies
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How frustrating. But the short answer to your question is "Yes, it's quite usual". Not only that, but even after you've got a first diagnosis, it might turn out to be something else! The main thing is to get the feeling that you're in control of the whole process, I guess. Good luck with that too! x

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So true. It's crazy. I feel at a dead end.

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U tell the Dr next week you don't need a positive ana to have lupus u could have negative n be lupus u could be positive and not have lupus ask her for the 11 list which u need 4 of list n by sounds u have 4 I know 23 years of argument with drs I told them 23 years ago I think I have lupus or fibromyalgia was told don't be stupid no u don't what was I diagnosed with 23 years after fighting going threw hundreds of drs mmmmmm..., Lupus and fibromyalgia keep fighting to get the diagnosis

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OMG!! That's all I gotta say after reading your post. I honestly think that I'm walking down the same path as you did. So darn frustrating that I really wanna hit my head against the wall sometimes. I've recently been diagnosed with Fibromyalgia & although I have every symptom of that.....I also have almost every symptom of Lupus as well. My test results showed no lupus. I have every other diesese in the book, but no lupus. I'm at a dead end and wanna give up. Thank you for you post. I'm truly sorry for all the suffering you've experienced but weirdly.....your story actually makes me feel like I'm not crazy.....you know?? Sigh!! I wish you all the best. Again, thank you for sharing your Journey of Faith with me. 😘

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The diagnosis of systemic autoimmune diseases are painfully difficult and long. Testing is not perfect, and the symptoms evolve over time. I know how hard it is to live with the uncertainty. It sounds to me the doctors are pretty certain you have autoimmune disease. They do not like to make specific diagnoses until they are sure. There is an excellent article by Michael Lockshin, a prominent rheumatologist, in which he addresses the issue of ANA negative lupus. He talks also about the difference in a phycian’s style in describing the patient as well as the importance of understanding the entire person and finding the best treatment regardless of diagnosis. I really think it will help to validate your feelings and to have confidence in what your doctors are doing. Try: Michael Lockshin, Ana-negative lupus in your search.

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Aloha!! Thank you for the info. If only everyone was aware of the diagnosing of Lupus. Sometimes.....NO, MOST TIMES I really feel like I'm losing it. Fevers every single day!! Sometimes they are hard to control and I can't take it no more!! I get red & weak with heat & the Sun. The cold actually HURTS my entire body. I have Osteoarthritis, Fibro, Constant ear & sinus infections, keratitis, gerd disease, headaches, joint aches, pain everywhere, burning in my fingers & toes & knees, nose infection, weakness, fatigue, rashes all over my body, I catch everyone's cold and etc., shaky hands to the point where I can barely write sometimes, joints in hands that allow me to drop things because of the pain, my joints comes out of its sockets if I pick up something wrong or bend down to grab something, my heart rate is high that I have a hard time breathing, brain fogs, I can't concentrate on one thing, depression, anxiety, I can't sleep, if I sleep for more than 3-4 hours at a time, I wake up so much in pain that I literally wanna cry. This sounds crazy but.....waking up after sleep.....HURTS!! My body kills me with pain stiffness everyday when I get up. It takes me a couple hours to talk my body into going on with my day!! My back is so sore that I have a hard time making good posture. Standing for too long gives me pain in my lower back & abdomen.....I don't know why. My fingers sometimes feel like it's on fire to the point where I touch the air conditioner for relief. My toes hurt?? I can't explain it but it feels like I've been on my feet all day wearing covered shoes. That pain never goes away. Etc. Etc. basically.....I feel like I have the worst case of the FLU every single day of my life!! That's putting it in a nutshell, I suppose. LoL. It's not funny by any means but honestly.....if I don't laugh at my "doesn't make any sense" symptoms & pain.....I would probably be in a psych ward somewhere. What else can people like me to, right?? Ugh.....I don't know. I need help.....that's for sure. I think my GP has ruled out Lupus because of my one blood work that I did. Although I have many other medical issues & concerns.....his answer is always.....stress or because I smoke cigarettes. I know these are horrible bad habits, I know.

I'm losing hope. In a million years, I never thought I'd ever say those words to myself, about anything in life but.....I just did. Damn me!! My Faith has guided me & picked me up all my life.....My Faith is me!! How can I feel this way??

I need a doctor that will help me so I can get the right treatment & LIVE. Live, that's what I want. Right now, I feel like my body & SOUL is dying.

Please forgive me all of you that read my pathetic post.....I needed so badly to vent. That was my 10 minutes of feeling sorry for myself.....lol. Everyone's entitled to 10 minutes a day!! Ha Ha.

But after all is said & done.....I know I'm stronger than my poor health. And, I know that there are people suffering more harshly in this world. And very importantly.....I know that I want to live & if I want to keep living.....I can't give up & must fight this!! We all gotta keep on, keepin on!! Thank God for this amazing site!! Thank you thank you!!

Thus site is LIFE SAVING FOR ME!! I swear....you all have.....saved my life. Sounds Mushie, huh?? Lol. Well, it's the whole truth and nothing but the truth. Reading all of your stories of ups and downs & etc.....has given me more power to fight this for myself.

Thank you all!!!!! I love you all!!!!!

To the creator of this site.....YOU ALL ARE GODS GIFT TO US ALL!! Thank You all!!

Many Blessings & the Warmest Aloha to Everyone,

Angela from Hawaii

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Hi Raesik,

An ANA test is not sufficient in confirming a diagnosis of lupus; an ANA test only confirms whether a person may or may not have an autoimmune disorder. Around 5% of people with lupus will test ‘negative’.

dsDNA antibodies are very specific for lupus (as they are not typically seen in any other condition or in healthy population) only approximately 60% of people with SLE will test ‘positive’. Therefore if someone is positive for these antibodies, it often means they have lupus, but if they are negative it does not necessarily mean they do not have lupus. For more information, you can read our blog article on ‘getting a diagnosis of lupus’ here: lupusuk.org.uk/getting-diag...

On average in the UK, it takes 6.4 years to get a diagnosis of lupus. It is important to bear in mind that lupus presently differently in each individual. Therefore, it is rare for two people to share the exact same experience.

Below, I have included some information links which I hope will be of help to you:

Light Sensitivity: lupusuk.org.uk/coping-with-...

Skin: lupusuk.org.uk/wp-content/u...

Heart & Lungs: lupusuk.org.uk/wp-content/u...

Oral/Nasal Ulcers: lupusuk.org.uk/coping-with-...

Hair Loss: lupusuk.org.uk/coping-with-...

Kidneys: lupusuk.org.uk/wp-content/u...

Please let us know how you get on, wishing you all the best.

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Thanks for all the information

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I wish you were able to pass your knowledge on to my GP. Sigh.....

Thank you for the wonderful, info!! Thank you for making me feel like I am not crazy!!

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Hi!! I am going through the same situation & honestly, I don't know how much longer I can exist. Sigh.....😢

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Hi Angela,

I am sorry to hear that you are having a tough time getting a diagnosis of lupus. Have you thought about contacting the Sjogren's & Lupus Foundation Hawaii? They may be able to provide you with information of lupus specialist consultants that you can visit, slfhawaii.org/

We have a number of blog articles discussing different topics and lupus which I hope you will find useful lupusuk.org.uk/category/blog/

I am glad to hear that you enjoy using this site!

Please keep us updated, wishing you all the best.

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