diagnosis

[Champ84]

because I dont have mouth ulcers I am not getting access to a centre for clinical excellence. i have many other symptoms associated with this condition.

[Spanielmadlady]

Hi.i don't get mouth ulcers I get nasel ones.there is an 11 point criteria for lupus you may find helpful. It is a long journey to diagnosis it often takes years and even then it can sometimes be a case of wait and see . Have you seen a Rheumatologist at all or had bloods done ANA,DS-DNA , Compliments? Some won't see you without positive results. Keep a symptoms dairy and pics of rashes. Best wishes x

[Champ84 in reply to Spanielmadlady]

thank you for your reply. my other symptoms are:- dry eye's, dry mouth thirsty all the time, urinary incontinence, breathing problems when walking, I had a pulmonary embolism in July 2022, nasal blocage, mobility very poor, borderline diabetes,

i also suddenly feel very cold. pins & needles in my left leg & sometimes in my head. i am currently seeing 5 different consultants! including a rheumatology consultant who in the past diagnosed me with fibromyalgia.

[Spanielmadlady in reply to Champ84]

Fibro often goes side by side with lupus. B12 deficiency ,sjogrens and thyroid could cause some of the symptoms you described also.there is alot of overlap that's part of the reason it is so hard to diagnosis...its very complex.keep going you will get there x

[Champ84 in reply to Spanielmadlady]

thank you for your reply

[OldTed60 in reply to Champ84]

I have Sjogren’s and Systemic Sclerosis plus Hypothyroid rather than Lupus. I often have mouth and sometimes nasal ulcers. Mouth ulcers aren’t specific to Lupus and you don’t need a clinic for excellence to be diagnosed and treated with any of these autoimmune diseases - although it can help. Some nations of UK don’t have these centres so we have to pay private if we want to travel and attend one. Diagnosis often starts with bloodwork, imaging, biopsies etc rather than just one symptom of many.

[Krazykat26]

I have never had mouth ulcers or the Malar rash but I'm diagnosed with lupus. Not all of us get every single symptom 💜🌈xx

[Champ84 in reply to Krazykat26]

thank you

[Oshgosh]

the whole auto immune thing is complicated.

I’ve always been prone to mouth ulcers.

Currently diagnosed with SLE NSIP,rheumatic disease Sjogrens.

I don’t understand it at all for months my eyes were very dry,now it’s mouth that’s the problem,ulcers blisters sore lips.

I’ve tried all sorts,rheumatology are currently not contactable on their helpline.

I’m going to try to speak to GP about it

M not optimistic!

[Champ84 in reply to Oshgosh]

i often have the feeling that I am not believed. blood tests either com back negative or only just within range.

thank you for your reply

[catblue1865 in reply to Champ84]

I too feel not believed due to mildly pos. Or negative blood test, first tried to get diagnosed in 2006.

[Lily77]

Hi Champ84, I have only ever had a few small mouth ulcers but have a severe SLE diagnosis. This has been reconfirmed in the last month with blood tests with a new rheumatologist. As I understand it you only need 4 of the 11 official symptoms but the key blood tests are, in my experience, usually seen as gatekeepers. However, the problem here is that the blood tests can vary and be stronger one day than another, so if 4 of the symptoms are there this SHOULD be the reason for further investigation.

[Champ84 in reply to Lily77]

thanks for your reply. i went for more blood tests on friday. the are now looking at betchets disease i really feel like i am going round in circles and after feeling

confident I feel stressed out with all of the setbacks.

[Lily77]

Perhaps it helps if I assure you that you are not alone. I come across many such cases. The average time for diagnosis is 6.7 years for lupus. It is often a process of elimination but they do get there. So sorry you are stressed, totally understand, I will send my best thoughts and a virtual hug!

[Champ84]

Your reply was very informative and also very helpful and welcome.

Thank you.

[KayHimm in reply to Champ84]

Champ84,

I can imagine you are pretty exhausted and frustrated if you are now being evaluated for Bechets. You have company here - several with the illness and some being watched and tested.

It sounds like a very hard one to diagnose. What is making them think of Bechets with you,

Wishing you luck.

Kay

[Champ84 in reply to KayHimm]

I am sorry that I haven't replied sooner. Even though I had a blood test for Lupus which revealed that it had been mildly touched on. My Dermatologist is still not convinced that I have this condition. With regard to my Symptoms for Bechets. I have swelling in my glands in my mouth. Dry eyes Dry mouth . But I also have many other Health problems which still haven't been thoroughly investigated.

[OldTed60]

I agree with others that mouth ulcers are pretty non specific and not having them doesn’t mean you don’t have Lupus, Sjogren’s etc. I think mine relate to Sjogren’s mostly but also certain toothpastes - so are likely mast cell related. They are fairly specific to Behcets though my dermatologist says so maybe it’s the behcets centre they won’t send you to due to no ulcers? My immunology bloods were only borderline for a long time and I had a lip biopsy to diagnose Sjogren’s years ago - although I’d already been diagnosed with other stuff, including Raynauds, neuropathy and inflammatory arthritis before that. Finally, after 12 years of vague diagnosis I got unequivocally diagnosed with Systemic Sclerosis last year due to very positive antibody and meeting all other diagnostic criteria at last. So hang in there - things can often change over time x

[Champ84 in reply to OldTed60]

Hello. Many thanks for your reply. I am sorry that I haven't replied sooner. I was very interested in your inclusion about toothpaste! What particular aspect of the toothpaste was relevant to the problem ?

[OldTed60 in reply to Champ84]

Well it’s strange you should ask because I had assumed it was Sodium Laurel Sulphate / SLS (spelt wrong I’m sure!). But then last week I suddenly got a spate of mouth ulcers with other symptoms eg fatigue and joint and muscle pain. I could barely eat or drink for pain. No change in using my SLS free Sensodyne toothpaste so clearly not this. I showed a pharmacist on Saturday and he excluded thrush so I went ahead and swilled with steroid mouthwash 4 times daily and the ulcers went away in a few days. My dermatologist said that overlap Behcets is a possibility but she also said there are no definitive tests she would recommend and I already have Systemic Sclerosis and Sjogren’s so am treated for these with Mycophenolate and Rituximab. My next round of Rituximab is almost due and I think this may be related as it seems to have been a break out autoimmune flare up. Maybe I have a bit of Lupus or Behcets in my mix?