Blood test negative

[Persiankiwi]

Ok, so been back to GP I see to manage my fibro & cfs, he said optometrist report suggests could be sjogrens due to very dry eyes etc but because my blood tests came back negative ( which he said he expected them too) I need a lip biopsy as he said Schrimer test not reliable either, and gave me a referral letter and pathology paper but couldn't recommend a dentist so have to find one my self.

Told him optometrist told me test very reliable as Lipi View and only a handful in Australia.

Anyone had a lip biopsy and/or know of one on Brisbane's South Side preferably

[Space99]

I live on the Northside. There is a Dry Eye clinic at QUT . Catch 111 from Garden City then a 390 at Roma St. It is free. Dr Julie Albietz (Optometry) has an interest in dry eyes. I have benefitted from the Manuka Honey....Optimel drops and gel. 10 year ago I had a lip biopsy by an Oral Pathologist. It was inconclusive. He said sometimes they can do half a dozen before they get a positive. I had an Ultrasound of my glands.

[Persiankiwi in reply to Space99]

I read there are a lot of blood tests & lip biopsy's inconclusive but he said he'd spoken to his friend who was a Rhuemotogist & aip biopsy was the only way to go but I'm not keen & half a dozen is a little scary ay. I'm going to my GP to ask for referral for immunologist as Bev mentioned on one of her you tube videos need an immunologist. 😀

[weathervane in reply to Persiankiwi]

I was diagnosed without lip biopsy, but i do know out friend twitchy has had one

[Space99 in reply to Persiankiwi]

My Periodentist referred me to the Oral Pathologist in Brisbane CBD. When my Rheumatologist heard I was going she suggested a lip biopsy. All I feel I got out of it was a bill and a sore lip! I am on a Facebook Sjögren's site with about 7,000 members. They always seem to be doing them. Apparently you need so many points for official diagnosis. Maybe this is connected to the American Disability pension and their health insurance.. The Sjögrens Foundation ( America) is a good read on Google . Tried Canada but didn't know where to look.

[Persiankiwi in reply to Space99]

Apparently Dr Albietz works Thursday at Mt Gravatt so have appointment in March. Thank you

[Space99 in reply to Persiankiwi]

Great! Are you aware there is a power subsidy for heating and cooling ($300+p/a) if you have certain medical conditions. Need a card such as Pension orHCC. Need a Specialist I think to sign you off. Google Medical Heating and cooling subsidy out of interest.

[Persiankiwi in reply to Space99]

Yes have heard of it but unfortunately not eligible for health care cards.

I've made appointment at my Rhuemotogist on March 3rd as can't stand it, my hairs wringing wet, my husband said to me yesterday " something's not right" I was perspiring just sitting but when he touched my arm it wa like ice. My GP last week said she thinks it's called gustatory sweating which is caused by a blockage in the nerve pathways & also linked to the paritory gland. I also made appointment at immunologist but can't get in until May. I went for a lie down late yesterday afternoon & didn't wake up until 5.40am & still feel exhausted. My friend in UK is a physio with an interest in Tibetan massage she says my meridians aren't synced? Not sure if I believe it or not but getting to the stage where I'll try anything.

[Space99 in reply to Persiankiwi]

Am interested. I get Raynauds but not badly. Often I can be sitting doing nothing and I get hot flushes. I blame thyroid as I am Hypo. My girlfriend says she will be throwing off bedclothes and husband pulling them up and v.v .! , never wet hair. My latest trick is in winter if I allow myself to get cold I get uncontrollable shivering. Somethings I get weird things and then never get them again. The hot weather knocked me around and I am so glad it is over. You know Swell Gals on Facebook is Brisbane based out of the Arthritis Foundation. It is forRheumatoid. Sjögrens can be allied to other Auto immune diseases. I went along to Scleroderma now at Carindale Library.As far as I can see I am Primary Sjögrens .

[Persiankiwi in reply to Space99]

My husband the same he always cold if I'm hot & v v. Have to have my hair up & can't wear sunglasses as have to keep wiping under my eyes, nose. Wet wipes my best friend at the mo. Is that a group at Carindale library. I'm 20 mins from there. Look at reasonablywell.net Sjogrens & sweat

[Space99 in reply to Persiankiwi]

Scleroderma meet on the 4th Friday of the month at 10 am at the Carindale Library. My suggestion would be to phone the President Gordon Harris 0419 759 766. He goes down to a Gold Coast group that meet at the Tallebudgera Surf club . I think there are dry eyes and mouths there. [e-mail] Also there is a group on Sunshine Coast.

I don't feel as though you would benefit that much from the Carindale meet as I last remember it..Focus was Scleroderma. I could make the effort to go and we could do coffee after. You might get dental help. I do a bus marathon to get there!

Thank you for that link.

[behappy1]

I didnt have have a lip biopsy as my symptoms were very apparent and my Rhemy decided it would add anything to get this done. It wouldn't change the treatment plan or entitle me to anything else.

[Persiankiwi in reply to behappy1]

Maybe I need a specialist, this Dr is GP with interest in fibro/ sjogrens.

Think I need second opinion.

Thanks guys, appreciate your advice 😍

[Hidden in reply to Persiankiwi]

Sorry to come so late to this post and discussion. Not sure what you decided in the end but as Weathervane says, I did have a lip biopsy last year and it was 100% positive for Sjögren's. They thought primary but because I was previously diagnosed and treated for RA and have secondary Raynauds they will test me in a few weeks for Scleroderma too are as as this is a closely related connective tissue disease.

I did have a clear positive ANA and persistently high inflammatory markers.

I was recently on Lupus UK HU and a US neuro opthamologist with SLE came onto a post about ANA and said that the lip biopsy is the definitive test for Sjögren's - if it's negative then this means that there is something else causing the sicca syndrome. I was surprised and queried this but he was quite adamant that many other things can cause dryness of eyes and mouth so it requires positive bloods and lip biopsy to confirm Sjögren's. I think it can be borderline if your Sjögren's is new though. I come across many who claim to still have Sjögren's despite negative testing acx get really angry about these strict diagnostic criteria but personally I need them in order to believe I really have the disease.

I'm on an immunesuppressant but am a bit unusual in this regard. For me the firm diagnosis from lip biopsy has really helped. It's good having the clarity, partly for psychological reasons as well as practical and medical ones. I didn't want another misdiagnosis and nor did I want to be labelled with Fibromyalgia or ME. Hope this helps if you still need the advice that is.