Advice please😄

[trace67]

Hi There

This is my first time writing on this interesting forum. I have been diagnosed with Undifferented connective tissue disease, the Rheumatoligst I see hasn't confirmed scleroderma but says I haven't got Raynards although I seem to have a lot of the same symptoms mainly in my fingers. I am taking Hydrxoychloroquine 200mg and Nifedipine 20mg plus other medication for high blood pressure. I have had a blood test CTD screen of 3.5 ENA 13 CENP 222. I was wondering if anyone could explain what the CENP test meant as when I asked the Rheumatoligst he wasn't very informative just said it should be around 10 Unfortunately he wasn't the best at coming forward with answers and I came away feeling no more informed then when I went. I have another app in 7 months. I am waiting to see my GP next week who unfortunately knows very little about the illness. So any advice or help would be appreciated thank you in advance

[amd21]

Hi Trace,

A CTD screen is a group of blood tests to confirm or rule out connective tissue diseases such as systemis sclerosis. in CTD's however mixed diagnoses i.e. having several things going on is common.

Cenp A & B are subdivisions/subtypes of the centromere's (cell proteins) that everyone naturally produces. In autoimmune disease we produce antibodies that attack our own cells, this type of testing is to precisely identify what types of autoantibodies you produce as we know certain antibodies are associated with certain patterns of disease / outcome eg anti- SCl 70 is associated with diffuse systemis sclerosis (scleroderma) anti centromere associated with limited cutaneous systemic sclerosis (CREST).

this is a good & reliable site (lots of GP's use it) to get info for uk users labtestsonline.org.uk/

wiki has a list of autoantibodies here en.wikipedia.org/wiki/Autoa... this gives info but no context so if you don't have a life sciences background its easy to be scared by the info - SRUK helpline is a really good source of info & advice from a human! sruk.co.uk/find-support/hel...

best wishes,

alan - for info/context i am anti centromere positive, ena negative, lupus anticoagulant positive. i have severe raynaud's & likely CREST & likely antiphospholipid sysndrome. all appeared in last 5 years.

[trace67 in reply to amd21]

Thank you for explaining it to me , I will look up the sites you suggest. I had no idea how may different illnesses and diseases relate to our autoimmune system so many people are affected and how it affects their daily life but like many illnesses it's learning to live with it and try and do the best you can. You seem to have alot to deal with I hope you are able to lead a reasonably normal day

Thanks again

[Hidden]

Hi Trace, I, too, have mixed connective tissue disease and empathize with you. I understand the aches and fatigue that accompany MCTD and the importance of taking good care of yourself. Try taking good vitamins and eat organic foods. Rest when you need to try taking 500 mgs of Niacin, three times daily to help your Raynaud's disease. Take the Twin Labs brand because it is the best. You can buy it at the Vitamin Shoppe. Keep reaching out. I will answer. Others here will help you, too.