Ana test

[Katie2333]

Just wondering if anyone has a negative ana but still has scleroderma? My hands have started showing symptoms but my ana test a couple months ago was negative..

[Hidden]

Hi Kate. Yep - I’ve had a positive test and a year or so later a negative. A positive result is conclusive but a negative isn’t; my rheumatologist assured me a negative result doesn’t rule it out so unfortunately I’m not the first ever person to self-heal scleroderma 😅

[dianekjs]

About 5-5% of confirmed systemic scleroderma cases are ANA negative. However, if the wrong ANA testing method was used, false negative ANA results are very common in scleroderma patients (50+%), which a PCP or general rheumatologist may well be unaware of. You need to be sure the test was run by the IFA method when scleroderma is suspected or a possibility.

[Bkart]

Hi Katie, again like you I tested negative twelve months ago and was then discharged from my local hospital Rheumatology. I insisted my GP refer me to Salford Scleroderma Unit, I saw Professor Herrick in May who wrote to my new GP requesting that he monitored meover the next 6 months to see if my condition stabilised

(although I had not been given a definitive diagnosis at that stage, and hadn’t I expected one then).

The monitoring, blood pressure checks etc., has not happened despite that the symptoms have become much clearer and a lot worse, I am really struggling and desperately need help and treatment. In fact my GP said that he would be thinking of sending me for psychological

evaluation which left me in tears!

My condition has definitely not stabilised and despite the previous negative blood results I do feel that it is highly likely that it is Scleroderma.

There are several web sites from reputable medical facilities which support Systemic Sclerosis with negative

ANA autoantibodies etc. I have also spoken to SRUK who

say this is possible.

Interestingly I came across two government web sites

yesterday UK Strategy for Rare Diseases, first published in 2013 and now updated in 2021. UK RareDiseases Framework Policy Paper and UK Strategy for Rare Diseases, Commitments. I thought the particular sections

1,5,11,12,14,23,25,49 and 51 were particularly

enlightening in the Commitments Paper and also very relevant I thought! Worth the time reading and knowing our rights for those with and without a diagnosis.

I am not political but having read these Government Stategies it calls to mind Greta Thunnbergs remarks on recent COP 26 climate change pronouncements, blah, blah, blah! I for one don’t think my GP has bothered to

read it let alone put it into action!

I have an appointment now in January at the Scleroderma

unit and I am so hoping that I get a diagnosis as I hope you

do as well. Nobody wants to hear the diagnosis but living with uncertainty and no treatment I think is worse.

Good luck.

[Kittyanto]

Hi Katie, I had similar results. My swelling in my hands and tendonitis in my both shoulders were my primary symptoms.

The blood test Ana came negative.

So I have been advices to keep testing and went to specialist who confirmed that it is scleroderma just by looking at my skin and symptoms.

There will be more tests to do like biopsy and CT scans.

Hope that helps.

[Bkart in reply to Kittyanto]

Hi Kittyanto, I was very interested to read your post as since my initial negative blood results a year ago my skin on my feet, legs and face/scalp and neck has really tightened and hardened and the same is now happening in my hands and arms. I also have weird tightening sensations in my back together with the Raynauds and swallowing difficulties and pain in joints and musclesI am seeing the Specialist again in January and hoping that

even if I still have negative bloods they will diagnose me on my symptoms like you. Have you had a cappilleroscopy

as well?

I don’t mean to sound sorry for myself, especially when so many others are worse but I am finding it hard mentally

coming to terms with wanting a diagnosis (who on earth would, if that makes sense to anyone) and being desperate for treatment to hopefully slow it down! So your post as with many others on this forum is so helpful.

Hoping the treatment you are getting will help you.

[Kittyanto in reply to Bkart]

Hi Bkart, I am sorry you are going through all this symptoms and not having an answer yet.I have similar symptoms with tightening the skin swelling in my both hands and arms and terrible reflux and heartburn and nerve pain and joint pain.

If anyone has some tips of how they manage their heartburn, like diet or other medicine that just omeprazole I would like to know please.

My skin has started to change colour as well towards brownish red on my knees and some other parts of the body.

I understand the frustration and we all just hope to get to the right treatment and slow it down.

My next appointment is in February and hope to get more tests and the right treatment.

Also hope that one day they will find a cure for it.

Best of luck

[Bkart in reply to Kittyanto]

Hi, thanks for your kind reply, I have the brownish skin changes too, it started around my ankles (skin tightening in my feet was my first symptom, apart from Raynauds which I’d had for many years but not realised what it was until it was diagnosed last year). As the tightening and hardening has spread up my legs so has the brown mottled skin, weird.

I take omeprazole too, started on it last February

but have just had bloods taken and told there is a change in my kidney function, speaking to my GP on Friday about this. I researched ompeprazole and S. Sclerosis and it seems it can have an effect on the kidneys. Have you or anyone else had this problem and if so are there any other PPI drugs that don’t cause this problem.

I was told by the SALT team (for swallowing difficulties) at my local hospital to also use Gaviscon ADVANCE liquid, you can get it on prescription as it’s quite expensive, but does

help. Also told to avoid citric fruit, tomato’s etc.

If the heartburns not too bad sometimes just a cold drink of skimmed milk also helps me.

Good luck with your appointment in February

and hopefully any new treatment will help you.

Yes a cure would be miraculous, but miracles

do happen. In the 1940’s my father as a young

teenager was given the Last Rights, he had TB Meningitis and was not expected to live. In a desperate attempt to save him he was given a

new (to hospital doctors then) experimental drug,

Penicillin, it saved him. I am here today because of that ‘miracle’ drug, so hope springs eternal for all of us I think.

[Kittyanto in reply to Bkart]

Thank you hope all gets better with you too.

[Sanmateogirl107]

ask your doctor about celebrex it helps me a lot there is also prazosin 1mg, rheumatologist, make noise if you do not get the answer you want keep bugging them. there is also wild lettuce for pain ebay, mt rose herbs it works great i take it every day. 10 drops under the tongue morning and night. love julie

[Kittyanto in reply to Sanmateogirl107]

Hi Julie, thank you for yo it kind advice.