Mild CTD?

[Zara-LouiseD]

Hi everyone,

After many years my rheumatologist has finally concurred that I appear to have a mild connective tissue disease - possibly Lupus (which I have been convinced of for a long time)

Apparently I don't meet all of the criteria but my clinical presentation combined with minor variations in blood results has made him reconsider!

I never test positive on the ANA tests, but I have had numerous tests (following random bruising) where my white blood count and platelets are slightly lower than normal - even though they claim not low enough to explain bruising.....

My rheumatologist did a load of tests and my anticardiolipin antibody Igm test was weakly positive at 15

I have had frequent migraines since I was 10yrs old, raynauds, UV skin rashes, other bizarre rashes, miscarriage (although only 1 and you need 2 for a diagnosis usually??) I have had joint pain on and off for many years - one particular flare diagnosed as psoriatic arthritis, food & drug allergies. I also suffer fatigue and memory issues/brain fog - I frequently struggle to remember people's names! - maybe it's due to age (41) but I'd hope not ☺️

I have asked the rheumy to repeat the anticardiolipin antibody test, for which I await the results - he said I may need to take low dose aspirin if it comes back positive

Has anyone else had a mild lupus diagnosis or mild CTD with similar blood tests coming back slightly out of normal range?

[fibroglow]

Hi Zara we messaged quite a while ago. I had the same tests probably a year ago. My tests came back in conclusive!!

Just had my Spinal Op, had L4/5 Disectomy with Decompression. 5 Weeks post Op!! With few issues but hopefully going in right direction. Do hope you Can get some answers!! All take a very long time etc!! After 25 years of Back problems. Finally got offered Op end of last year. 9 Months later had Op.

Seems to be always keeping plugging away, at Health profession. Eventually there seems to be some Support & Help.

Wishing You All The Best Lv Jan. XXX😀

[Zara-LouiseD in reply to fibroglow]

Hi Jan

Thanks for your reply 😀

I think my rheumy would like to say inconclusive but repeat tests are up and down and it's obv there's something going on but aside from mild connective tissue disease he said he can't put a name to it just yet!

He always shakes his head at me cos I go to see him to try and get a diagnosis but I always refuse his offers of steroid injections into painful joints or any other poison pills. He must see lots of people who go to him for the prescription meds whereas I want to look at alternative medicine first.......once I get a name for what's going on lol

I'm glad you've finally had your spinal op - at least now you can start to move forward. I can't stress enough how important it is to do your physio...... even when it seems like you're peeing in the wind! I still have peripheral neuropathy- half of my foot feels like plastic most of the time lol and I get a lot of leg/foot cramps but reflexology is helping somewhat - even though it's been nearly 4yrs since my op at L4/L5

Don't settle for them telling you 'that's the best you can hope for' hope and determination are the route to recovery 😊

Good luck with your recovery

Love Zara x

[fibroglow in reply to Zara-LouiseD]

Thanks Zara just doing my excercises at 🏡Hope Start Physio soon. Take Care. XX

[Paul_Howard Partner LUPUS UK]

Hi Zara-LouiseD ,

There are a few people here who have experienced a diagnosis of undifferentiated connective tissue disease (UCTD), a 'lupus-like' disease or similar. I have a couple of pages about UCTD scanned from The Lupus Encyclopedia which I could email to you if you'd like? Just send me a private message or email [e-mail] with your email address.

If you need more information about lupus and how it is diagnosed we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

[baba]

Look up Hughes Syndrome/APS/Sticky blood

[Sara_A]

Hi, I have lupus and antiphospholipid syndrome (anti cardiolipin antibodies) mine were always around 50 ish but last time were over 200 but I'm not sure what this means if the actual number is significant or if it's just positive it's positive??

I have been taking aspirin for about 10 years I am 37 now. During pregnancy I inject heparin daily and have had 2 successful pregnancies

[Zara-LouiseD in reply to Sara_A]

From what I could gather 10 is normal 15-40 is weak positive and anything above that is positive- I imagine the higher the number the stickier the blood might be?

Has the aspirin caused any problems with your stomach? I already have gastritis a small hiatus hernia and duodenitis from taking diclofenac....... I'm a little worried about the effect aspirin will have if I need to take it daily - although it would be amazing if something actually stopped these migraines!

[Sara_A in reply to Zara-LouiseD]

I have some stomach issues anyway not sure which meds caused it I can't take brufen, diclofenac or naproxen as it burns my stomach even tho I'm on omeprazole. So not sure but I seem to manage ok on aspirin it's a low dose we are on so shouldn't be too bad.

I suffer with migraines and I am on beta blockers which seems to control them quite well I used to get them daily for yrs was awful!

[Zara-LouiseD in reply to Sara_A]

Thanks Sara - that gives me some hope!

I can't take beta blockers as they could cause a huge flare with my psoriasis, which thankfully is reasonably limited at present! X

[Patricia2015]

Hi Zara,

Welcome to this wonderful forum!

I am one of the people Paul mentioned who have UCTD.

You can read my experiences with a.o UCTD and HMS on my personal page.

It is a struggle...

Greets,

[Happykins]

Hi Zara, I'm another one of those with UCTD as my rheumy said my bloods are 'inconclusive.'

I do find it difficult to explain to family & friends just what this is & feel that they don't really believe me when I say I'm going through a difficult flare.

Luckily my rheumy is great, I'm so thankful that he's willing to treat me mainly on symptoms.

I tried Quinoric but had pretty horrendous allergic reaction to it. Now taking mepacrine & get regular depo medrone injections.

Wishing you all the best, jilly xx