Diagnosis

[misty14]

Hello everyone

Is sero-negative lupus the same diagnosis as Undifferentiated Connective Tissue Disease?.

I will be interested to see your replies. X

[Fennella02]

Hi Misty. That's a hard one to answer definitively. After carrying a diagnosis of ANA neg Lupus for many years, review by a professor recently states "I do believe she has an underlying autoimmune systemic rheumatic disease ..best described as an undifferentiated connective disease". I have a lot of Lupus features including low C3C4. I was entered into a genetic research project at the same time under the category 'SLE sub-phenotype'.

I do notice that my symptoms seem to be constantly evolving/morphing which perhaps wouldn't happen to such an extent if I fitted a truer blood profile??

My treatment and management are identical.

It's a good question, I shall watch this post with interest. Clare

[misty14 in reply to Fennella02]

Hi Clare

Thanks for your post, my illness profile is similar to yours only I tested positive for ANA but no other antibody tests. I find it all so confusing and suddenly thought of this question after Amandajane's post. Thank goodness we can be treated the same , my illness is evolving still after 28 years!. Hope your wellX

[Fennella02 in reply to misty14]

Hi Misty. I caouldn't remember how your symptoms mostly affect you so I looked at your earlier posts and I see that polymyositis was suspected at one time. Did they diagnose you with it? These days I get terrible intermittent muscle soreness and weakness - sometimes I can't hold plates or stand without wobbling etc. This has been attributed (tentatively) to ?hydroxychloroquine, ?too much pred and even ?too little pred! The weakness affects my eye, my swallowing, breathing, upper arms & legs and hips. I don't know why this happens and it is a concern.

Ps. I have been ANA pos at times but it can then be negative despite being mid flare so isn't reliable for me. I think that being sero neg causes us to constantly wonder whether 'something else' is also going on.

Have a good w/e x

[misty14 in reply to Fennella02]

Hi Clare

It's interesting that your ANA has altered from positive to negative because that is what mine has suddenly done and I wondered if it was being on steroids only?. Not having a clear cut diagnosis is a nightmare extra for us to deal with and I do find it difficult explaining what I've got to other health professionals. Do you?.Polymyostitis is still a thought as my Rheumy won't be drawn. I have similar problems to you with my legs , arms, eye the lower I go on the steroids. I do know one of the steroid side effects is weakness so it's difficult isn't it?. It sounds like you have it badly. Have you been diagnosed with it or is it a wait and see?. Do you have that said to you a lot?. Take CareX

[Fennella02 in reply to misty14]

Hi Misty, a very slow reply for which I apologise. The weakness is recognised and diagnosed in my respiratory system but the rest is based on my account of events. It is documented but my EMG was normal which I didn't expect. I think my Rheumatologists recognise and believe my symptoms but resolution is based on effective treatment which they believe I am on. I'm settled on the Mycophenolate and not in a rush to change the DMARDS anytime soon. No-one has mentioned polymyositis other than considering MCTD a year ago but my lack of antibodies seemed to rule that one out. 'Wait and See' does seem to be a prevailing theme . . Hooe you're well x

[molly19 in reply to Fennella02]

Hi Clare my muscle weakness is awful to accompanied with muscle ache, and can be embarrassing. As you say dropping plates and holding a cup of tea can be difficult. I now at physio to see if they can strengthen muscles. Splints help.

[Fennella02 in reply to molly19]

Sorry I've been so slow to reply Molly. I'm interested to hear that you suffer from the weakness too - can I ask if this is intermittent ie during flares or is it constant? Also, how did they diagnose the weakness? My EMG/RNS was pretty normal but I do have diagnosed respiratory weakness and central sleep apnea. The weakness of my arms and legs is documented more because I highlight it frequently to the Docs but no-one has offered Physio. I wondered if you had undergone specific tests to pinpoint the weakness? I remain able to walk my dog for a couple of hours a day but can't do much more, certainly can't increase my pace but having said all that, lack of movement makes me feel awful too . . . A no win situation perhaps?

[molly19 in reply to Fennella02]

Hi Clair, my weakness in my arms was diagnosed by my occupational therapist as numerous tests on strength are extremely low I've virtually got no grip in hands or strength in wrists. Have got numerous exercises to do. My knees it's osteoarthritis left knee keeps slipping out, again got numerous exercises to do. I new my hands weren't right with dropping things and doing simple tasks hopeless. But like yourself I still take my dog out and I feel she has done me good. Hope you get help. It was my rheumatologist that sent me to physio. Take care.

[molly19 in reply to Fennella02]

Hi again Claire my sore muscles are sore all the time, and tend to be worse a week before my monthly like aching muscle cramps in limbs. Hope this helps you.

[Wrendoe in reply to misty14]

Hi I have had positive ana for over a year but last 2 tests have been negative so consultant now looking towards fibro! They really don't want to say def lupus as no butterfly rash and now neg sero. This is dispute research showing that these symptoms are only present in below 50% of sufferers. Feel like I keep getting brushed off to limbo land! Gonna keep pushing and gonna do a research/ info sheet for consultant and gp to highlight these points

[misty14 in reply to Wrendoe]

Hi Wrendoe

Thank you for your reply. It's interesting that your ANA has suddenly changed to being negative after being positive. Mine has recently done the same and have seen on here that steroids can affect blood readings. Do you take them?. Interesting research you've found. I thought the butterfly rash was a more prevalent symptom than that!. It is hard and frustrating trying to get a definitive diagnosis, we as a group of patients are so reliant on an open- minded Rheumy to get the treatment we need!. I have been warned by my Consulatant that they may never fully know which CTD it is. Fibro can be treated with painkillers if you are given that label. Do you see your Rheumy soon?. Take CareX

[Wrendoe in reply to misty14]

Morning Misty14

Not been on steroids as yet. Always looking at any updated stats or info. Did the lupus 'quiz' recently and was surprised how different the prevalence of 'diagnostic' symptoms were. Listening to rheumys u almost feel that 'no recognisable butterfly rash, no lupie!' Do get fed up feeling like I'm wasting their time! But I'm an ex nurse so quite have to research and educate others, even the 'profs' lol x got a 4 yr old with chicken pics so been up since 3am, got to tell lupie to do one so I can catch some zzzzzz or heading into zombie world lol x speak again x hugs and spoons x

[Purpletop]

No, they are different. Lupus has a specific list of symptoms that helps the diagnosis notwithstanding the presence or absence of antibodies in the blood.

UCTD is a separate disease - it causes a collection of symptoms that are found in other autoimmune diseases as well as lupus symptoms, a bit of everything.

Treatment for these is broadly the same but symptoms wise there is a difference.

Having said that, many doctors are themselves confused about these and they tend to apply the UCTD label when there is no clear indication of blood antibodies specific to a particular disease.

For example - My rheumatologist has diagnosed me with seronegative lupus but every neuro I've seen since being diagnosed prefer to refer to it as UCTD because they only rely on blood tests, not symptoms.

[misty14 in reply to Purpletop]

Hi Purpletop

Thanks for your helpful reply. Isn't the subject of diagnosis confusing, heartening that it is for the doctors too!.

How are you getting on?. How are your eyes?.X

[Purpletop in reply to misty14]

Left eye is still not sorted out, although all tests say that the vision is fine. I've just had some electrodiagnostic tests done and I'm waiting for the results. Meanwhile my joints have started to hurt more than usual, so I'm thinking "what now" but I'm seeing the rheumatologist on Monday. I really don't want to try another drug, who knows what other part of the brain gets fried this time!

You've had lupus for 28 years!! That gives me hope - I've been diagnosed 3 years ago, I can't imagine myself living with this for a long time, it feels like it will soon finish me off :).

[misty14 in reply to Purpletop]

Hi Purpletop

Good luck for when you see your Rheumy on Monday. I hope you get help for your joints, I'm having similar problems with mine and isn't it wearing?. Trouble is we don't know what our bodies will throw at us next and it's tough keeping going!. I'm sorry about your eye but thank goodness your vision is ok. I hope you don't have to wait long for those test results!. There must be an explanation for it!. Thanks again for your diagnosis explanation, I understand much better now. You've got such a good understanding of it all considering you haven't had it that long!. Keep us postedX