mstr10 years ago

Hi Lulu85, It sounds a bit similar to me. My rheumy saying UCTD although like you he said I have all the symptoms of lupus and 5 ana posive nucleolar pattern. There is more than one type of connechctve tissue disease eg: rheumatoid arthritis, schleraderma, lupus. My understanding is that things take time to evolve.... you can eventually just test positive for a particular one or you may have elements of all three or two etc. Hence you can have mixed connective tissue disease or an overlap of conditions. I too am being treated for lupus with placquenil although my understanding is that this is good for the other conditions too. Like you it would be good to know for sure which one but I do understand that this takes time now. Also the last time my rheumy said he would rather treat the symptoms that arise as he wants to make sure he does not miss anything important. Initially thought this was not a proper diagnosis but it is and my appointment for the rheumy has been brought forward following my nerve/muscle tests as the physcal examination indicated that I also have proximal and distal weakness. I hope to hear at the next appointment although at times I get frustrated as the 'goal posts' seem to move again. It is very frustrating for us but I now see that I am being treated well/tested appropriately and this is what helps. M

LULU8510 years ago

hi

Thanks for the reply

I understand that things take time to evolve. I was first told I had possible Behcets and then since January new symptoms have arrived and others got worse so the rhuemy ran more tests and are now more confident things are going down the Lupus route. Just find it hard to understand what is needed for a total diagnosis. My family dont understand why im so desperate for a name but to me it means alot to be able to say its x y or z.

Hope you get somewhere at your next appointment

mstr10 years ago

Hi Lulu, I totally got your post because until the past month I have felt so desperate for a diagnosis and felt so disapointed that I either felt stalled from getting a diagnosis and more tests always seemed to need to be done. I have felt that I have been relentless in my pursuit of a diagnosis so I totally understand what you are saying. I think it is because if you get a diagnosis you can justify why we feel as we do. Like you I am told I have all the symptoms of lupus (observed by rheumy and also seen on pics I have taken on phone of malar rash (confirmed) and inflammed joints and an ana test - so why the long wait. Well I realised after the last appointment when my rheumy offered more of an explanation. He said he didn't want to miss anything underlying too and that a lot of consultants would say lupus but he wanted to ensure there was nothing else. It now makes sense that after my nerve and muscle tests that he was checking for any motor problems, ALS etc too. This proved ok and although I have weakness it is not nerves/muscles and was told it was because of the underlying condition of connective tissue disease. I suddenly realised that just to treat me with lupus/CTD in isolation could be ignoring other symptoms that may be even more serious. Also if he put me on stronger meds then this may have not been right if I also had another condition. I think it helped me to think that whilst I do want to have a definitive diagnosis I am being looked after propely. I have finally accepted that I was just beating myself up more by needing a straght answer and I don;t think medicine is as straight forward as that. I wish it was an easy answer as I think many of us here have experienced this frustration. Instead I am gong to toast my new found patience, acceptance, perseverance, endurance and empathy that I have towards others who are going through this too. x

nanny410 years ago

Hi i just wanted to let you lupus etc is a sneaky disease.My daughter is 26 was dxd with severe systemic lupus a year ago,up until last week she was on plaquil,steroids and methotrexate,she was told last week that she didnt have lupus,that she had vasculitis,4 days later she was told that she needs to slowly come off all her lupus meds because she doesnt have vasculitis either,the trouble is these doctors are not all doing there job properly,now what they want my daughter to do is come off all the meds and wait and see what happens,she had been unwell for years before she wad started on the meds,which i must add are used to treat many autoimmune diseases.At one point my daughter was being treated as if she had lupus! It turns out the consultant who told her she HAD lupus had been suspended and no longer worked in the nhs,but no one told. my daughter that her case was being questioned.As of now she is going to be on no meds and waiting to see what happens with her skin or her inflammatory markers.

She sees a cardiologist as she had svarring on her heart. valves and takes meds for that she sees a renal consultant as she has scarring on her kidneys which she didnt have a year ago.She sees a dermatoligist as she suffers anaphalaxis from what is thought to be food allergies,her list goes on,bless her,i do hope you get some much needed answers and it doesn't take forever,sandy.

Thaddeus10 years ago

If it walks like a Duck amd it quacks!!!!

This is to all effect Lupus, and it is only the pedantics of very fine diagnosis which says otherwise. Ten years ago that yhese test would have nailed it as such, but as things have become m ore refiined, so the definition has scattered us into a spectrum of conmditions.

On the other hand, a decade ago fewer doctors would have recognized it.

Call it mild lupus and let your mind alone.

Mild does nuot mean trivial.

And a name for what ails you is empowering.

Thaddeus in reply to Thaddeus10 years ago

Trigger finger is jammed this morning. sorry about poor typing.

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tintin4910 years ago

sometimes i wonder if there is a political bias regarding lupus so diverse is the traetment and diagnosis, it divided my gp and my rheumy and the dss.

if you want to be marginalised and ignored mention you have lupus.

Coppernob10 years ago

What I'm finding difficult about diagnosis is that I'm suspecting my relatively new rheumy isn't entirely sure I've got 'anything', if you know what I mean. She puts on her letters 'APS previously diagnosed' which comes across to me as though she doesn't believe it and thinks somebody else got it wrong, because I don't currently show ACL antibodies (though I did, several times, when diagnosed, and had all the symptoms). At that time I was also told I had Sjogren's - tho I didn't show Sjogren's antibodies.

All my other antibody tests are negative too. What I do have is positive Shirmer's dry eye test, raised ESR and raised IgE, blood and sometimes protein in the urine (awaiting biopsy of bladder polyps), recurrent bouts of 'pneumonia', SOB, and all the general malaise we all get. Also positive for hypermobility. And 400mg Plaquenil/day helps enormously. As do low-dose steroids.

Should I be pestering for a more conclusive diagnosis? Or be content with the fact that rheumy (who specialises in Lupus and Sjogren's) is at least willing to keep seeing me? GP is fairly supportive so that's a major bonus.

Thanks.

Thaddeus in reply to Coppernob10 years ago

It walks like a duck and it quacks!

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Neverforget10 years ago

Hi,

I'm recently knew to this site. In 2004 I was hospitalised after falling ill quite suddenly. Within hours I went from having a stiff neck to feeling like I'd been hit by a bus. by the time I put myself to bed I found it too painful to breath and ended up in hospital. Whilst in hospital I had a number of blood tests. They initially put my symptoms down to Parvovirus. I attended an outpatients appointment and all my blood tests were found to be positive for Lupus. I was also found to have thick blood and was put on aspirin. (Whilst in hospital the Dr noticed I had lacy skin and was aware that I had a history of migraines and mis-carriages.)

Although all my tests came back positive for Lupus, I was informed that I may have had a false positive and that they did not want to label me. I was under the Rheumy for a year and was later discharged.

Over the years I have been back and too to my Gp with extreme fatigue to the point whereby i feel like I am going to calapse, weight gain, period problems and a rash on my arm. They kept testing me for thyroid Function due to family history but each time the tests came back negative and they would say I probably had post viral fatigue.

I December 2012 I had sever problems with my chest and ended up being placed on various inhalers and steroids. Each time I had a flare up with my chest I noticed that my skin on my arms would flare up again. I asked a number of Dr's what the rash (red and scaley) could be and they kept giving me different answers, even saying it could be a fungal infection. No one referred me to a dermatologist. Each time I had steroids the rash and my symptoms would go away.

In March this year myself an some work colleagues all had a viral infection. However, I didn't seem to get over it. I started swelling up all over my body including my face. After a while I noticed that each time I had pain whether it be my face, hands, neck, knees, feet or ankles etc then I would swell up. My rash again began to get angry and I was beginning to become extreme fatigue. On really bad days I couldn't think properly due to what I can only described as a thick fog in my head and getting light headedness, Getting out of bed in the morning to move around was a big problem for me and I found that I could no longer just get out of bed and walk down stairs.

I finally saw a rheumy on the 15th August. I went armed with my many photographs of my illness and swellings. I was having a good week when I went to see the rheumy but she could still see signs of my swellings and could clearly see my rash. I felt a sense of sadness and relief when I saw my rheumy. She told me that I had a connective tissue, auto immune disorder. I asked her 'if all my test come back negative, does this mean I am well and that I just have a strange body?' She replied 'no, it just means that we haven't done the right tests yet and may not have found a name for your disorder.' She also went on to explain that there may also be no known name yet for my disorder but she reassured me that she will do what ever it takes to help me to deal with my symptoms.

The 5 months prior to seeing my rheumy I felt like I was wasting GP's time. Even though I felt really ill and was frightened by what was happening to me, the Gp's just fobbed me off as the blood tests they did kept coming back negative. Their attitude towards me at times was very appalling and was often left feeling more disheartened than ever and alone.

After I saw my Rheumy I was placed on Plaquenil. After a week I noticed that my symptoms were beginning to improve and I started to feel much better in myself. My work colleagues who had observed me being one size one day and another size another day also noticed the improvement to my physical and emotional well being. Unfortunately after 2 weeks of taking the Plaquenil I fell ill and ended up in hospital.

The consultants I saw feel that I may have had an allergic reaction to Plaquenil and which resulted in a big flare up. I looked like I had measles an experienced a nagging headache and blurred vision. I have been placed on steroids for four weeks and Vit D as I am severely deficient.

I had a CDT Scan and Im due to have an Mri scan in a couple of weeks.

The consultants who saw me in hospital feel that I have a mixed connective tissue auto immune disorder - part Lupus and part something else. I am due to see my rheumy again on the 26th. I have been told that treatment is going to be trial and error.

I saw a dermatologist on Friday who confirmed that the red scaly rash I get each time I become unwell is part of my auto immune disorder.

It's taken 8 years to get this far, but feel that I am finally being listened to.

Don't feel disheartened that you haven't got a set name for your disorder. Just accept that you have got a connective tissue auto immune disorder and that your rheumy is doing everything they can to help you deal with your symptoms and are ensuring that no stone is left unturned.

All the very best for the future.

Please keep in touch x x x x

Coppernob10 years ago

Great post, Neverforget, thanks for that. Think majority of us can relate to what you've been through/are going through. I shall try not to panic that diagnosis seems to be such a constantly moving goalpost and shall also try to remain strong and insistent should rheumy (or any other medic) start getting dismissive - esp. re test results.

Thanks again.

janiceray10 years ago

I had this and was then put to mild lupus or lupus like.I had to accept that knowing they were still keeping an eye on me,and in my own mind i accepted also as i thought i was a HyperC and then i started to live my life ,I have lived like this for over 20 yrs and have bloods done once a year or if i am am poorly as my ESR is quite high when im poorly,both myself and my Doctors regard me as Lupus.

all the best

LULU8510 years ago

Thanks for all the replies

Neverforget- I cant believe its taken you 8 years to get some answers.I hope you get on the right treatment soon and start to feel better.

Its interesting to hear how different doctors 'label' people and its frustrating that you can see one doctor and be told its one thing and another doctor refer to things as something else.

lowicklady5510 years ago

As I had a DVT I have to wait until October before I can have the blood test that will show whether I have lupus. I have been on plaquenil since May twice and quinoric 3times now. Sept supply is quinoric 4oomg because my hair has fallen out and prednisolone now at 2 mg. To begin with when the dose went up I couldn't sleep and I get the occassional headache. I have been ill for 14 months now.

nicky123410 years ago

hi i am new here, i also have mixed connective

with lupus being the main one.

i do think years ago they would have said lupus cause of all the symptons it brings.

my m.c.

involves lupus scleroderma raynaulds sjogens fibromyalgia hypermobility tendonititis

heart diease cant remember what else at the moment.

but last week i had a stroke, 3 months ago had blood clot on my lung

but i dont have hughes or sticky blood.

i just say i have lupus unless its the social or i am in hosiptal. xx.