One thing I have noticed a lot of lately is just how many of us are confused by the terminology when it comes to autoimmune diseases....I know that I am. I get my letters through after my hospital appointments and they are just full of letters and words that are completely foreign to me, which is infuriating as I very rarely get any explanation as to what these things mean. Now I know that some of us don't mind this and that is perfectly fine, but my main issue with the jargon is that because of the fog I forget what I have been tested for and when. Equally when I receive the results from blood tests or similar, I want to know what they mean for e and my future. I am lucky that I have a great GP who I can ring up and ask what any results mean, however this isn't always possible as some of the tests are very specific to rheumatology and sometimes they are too busy which is more than understandable.
Equally have turned numerous times to the internet to try and get the answers that I need. This is where it can get tricky. If you find a medical resource site, you will be likely to find that it is written in medical jargon anyway and you end up no closer than you were before. Then you can come across Wikipedia articles for example, that you cannot always trust the information within. So I thought for this post I would list some of the best resources I have found, give some explanation to some of the tests you may come across (remembering that I am not medically trained) and offer some of the options I have come across to try and get answers.
Start off with information sites that are dedicated to your particular illness or concern.
Like I said before I try to steer clear of certain sites like Wikipedia. Equally there will be times that you Google the term and it can bring back some very frightening results, which is the last thing that you need. So I always start with trusted websites and see where they can get me. So here are some that I use regularly to help me;
I find each of these websites trustworthy, reliable and useful for general information as an overview.
Some terms explained
Right here is where we get to the nitty gritty. There are many websites out there that will help you will blanket overviews of your specific concerns, however once you get down to the finer details of blood test results or similar, it can be really tricky to find out the relevant explanations. So I thought I would pull together the ones that I have found and offer you some sites that come with a glossary of terminology.
Here are some that I have really struggled with over recent months/years.
- ACA (Anti-Cardioplin Antibodies) - An Antibody that is commonly found in autoimmune diseases including lupus. This antibody, as the name suggests, relates to the heart.
- Anti - SM Antibodies - Antibodies that are very closely related to Lupus. These antibodies are found commonly in people with SLE and other forms of Lupus.This antibody is rarely found in other rheumatologic diseases.
- ANA (Antinuclear Antibodies) - These antibodies can be a signal of auto immune disease although they are not a definitive test alone. ANA's can also be found within a small percentage of healthy individuals, so this is a starter test to indicate more exploration is needed.
- CRP (C Reactive proteins) - This protein is produced near the liver and is an indication of inflammation within the body.
- LgG (Immunoglobulin G) - Another one that i had no idea what it meant. This is the main antibody found in our blood and is an indicator of a variety of auto immune diseases like lupus.
- UCTD (Undifferentiated Connective Tissue Disease) - this was my very initial diagnosis before the diseases had presented themselves. In short is is an overlap condition in someone that does not present with definitive symptoms of any one single disease.
- MCTD (Mixed Connective Tissue Disease) - this is where I am now. MCTD is an overlap disease where you have more than one autoimmune connective tissue disease. In general these are SLE, Sjogrens, Scleroderma.
- ESR - This is another blood test result that shows up inflammation within the body.
- Anti-Centromere Antibody - This is one that always comes back positive for me. This is an antibody that is highly suggestive of Scleroderma.
- Lupus Anticoagulant - This actually is not lupus specific, even though the name suggests it. This is a test to see how sticky your blood is. It can be an indication of Hughes syndrome or clotting problems.
I hope this helps everyone and if you have any questions please don't hesitate to ask.
