Confused

[Windy51]

Why does everyone talk with abbreviations I don’t understand anything that anyone says why can’t you all just right the letters

[friendofpiglet]

Because it's easier. The abbreviations tend to be for long, difficult to spell scientific terms.

Anyway, consider that 'laser' is an acronym and if you visited your local computer shop and asked to buy a light amplification by stimulated emission of radiation printer, the staff would probably be calling for those men in white coats to come and get you.

😃

Andy

[Anag in reply to friendofpiglet]

I know this is meant to be funny, but for Windy, this is difficult and frustrating and she needs help navigating the world she’s fallen into. We she answer to such patients with that in mind.

[Windy51 in reply to Anag]

I have had ET for 9 months and still learning

[tracey13 in reply to Windy51]

When I didn't understand an abbreviation I just googled it .Or asked on here what they meant .

Tracey

[Ebot]

Hi there. For anyone newly diagnosed and new to this Forum the names and abbreviated names of all the conditions, mutations, blood tests and drugs can be very confusing.

This is entirely understandable. It happens in every business, professional, sporting and hobby community - it takes time to become familiar with the ‘shorthand’. As you become better acquainted with your condition you’ll become increasingly familiar with all the terms used. Most of them are far too long and complex to be spelt out in full - and many are just known by the abbreviated forms given to them by the scientists and used by the clinicians.

Take a look at the MPN Voice website. You’ll see explanations of many of the terms used on this Forum. I’m sure as you read the posts and research your condition further all will become clearer.

[Anag in reply to Ebot]

Wonderful answer!

[Windy51 in reply to Ebot]

Thanks

[Wyebird]

Lol I just google and often when you google you realise the abbreviations are far better than the long words or phrases.

[MPort]

It can be difficult but the abbreviated forms connect neatly. HCT haematocrit. And they are part of the high learning curve of having an MPN. It's not really the abbreviation that is the problem it is knowing the meaning behind them. I have PV for 15 years and still look up abbreviations I haven't checked out for a while. In the beginning I had a crib sheet. I am now taking up knitting after about 15 year gap and the abbreviations are a mystery. New learning curve to be scaled. You don't need them all. Depending on whether you have PV or ET you will quickly learn the key words. The rest can come later. They are easier than sudoku!,

[Windy51 in reply to MPort]

Is Pv the next stage after ET

[Mazcd Partner MPNVoice in reply to Windy51]

Hi Windy51, it is not a natural progression, some people with ET may progress to PV, but not everyone. With regards to the use of abbreviations, it can be very confusing, especially when you are newly diagnosed, and it is even more confusing, as others have said, when the abbreviations used are different in various countries. If someone uses an abbreviation or term that you don't understand you can ask them to explain it to you, I am sure that no-one will mind doing that for you, and for others who may not understand. Best wishes, Maz

[MPort]

No parralel MPNS. ET to do with platelets, PV to do with red blood cells. You could ask administration for a buddy to help you get started.

[katiewalsh]

No. I think some may go to PV but I believe it’s less much likely than staying at ET or going to post ET - MF (Myelofibrosis). Someone else can answer you with more certainty including Maz.

[Fernsong]

I agree, Windy. I know that it's quicker and easier to use abbreviations and for the more 'seasoned' MPNers it's probably now a doddle but for the likes of me, who's had very little dealings with medical paraphernalia and finds it difficult to retain certain information anyway, it's a nightmare!

I live in France, where many of the medical abbreviations are different to the English ones, so it becomes doubly difficult to understand what some MPNers are trying to convey.

As Wyebird has already mentioned, I also google them and then re-google using a French-English medical terms website. It's a fiddle but I get there in the end - mostly! In fact, I've begun making a list of the French and English abbreviations and their full meanings. I just can't find some of them, though!

Good luck with it, Windy...

[Barbara140]

Something that confused me initially was the different terminology used in different countries eg labs v blood tests, different names for drugs, different ways of measuring results. I was initially shocked when I saw that people were reporting platelets in excess of a million until I realised you needed to multiply UK results by 10, and then the differences weren't so stark.I often look up the bio of contributors to see in which country they live. Unfortunately in most cases they are left blank. Thanks Windy for telling us that you are in Australia

[JaK2ET in reply to Barbara140]

I have been confused by platelet counts, too! In the UK, I think we tend to talk about the platelet count per nanolitre; in this system, for example, 300 would be a normal count, 600 raised, and 1,000 very high. In some other countries, they seem to express the results per microlitre, which is 1,000 times bigger than a nanolitre, so the corresponding platelet counts in the previous examples would be: 300,000 normal; 600,000 raised; 1,000,000 (one million) very high. I hope I've got this right ... !

Concerning abbreviations, it gets really difficult if you try to read a scientific paper relating to MPNs. I looked at one which started with a list of about 50 abbreviations, only a few of them being even slightly familiar to me. When first used, the term may be set out in full but from then on the abbreviation is used and I can't remember what they all stand for ...

[Tico]

Thank God for abbreviations! When I had a second stroke,for months I struggled with texting and it came out all gobbly gook were only my daughter could understand it. To this day I can sometimes struggle and hit wrong keys. I would prefer to 'test speak' when sending texts as it makes it shorter. I only do long hand on here so people can understand it but like many on here I use abbreviations because its easier and saves time and in my case effort! Tina.🤗

[robbjoy]

Hi Windy, Here are some common MPN acronyms

Hope this helps!

mpninfo.org/medical-informa...

[Devilgirl]

I was diagnosed 2 years ago & joined this group shortly after. I am also still at a loss over a lot of the acronyms & spend a lot of time looking them up on Google. The link provided by robbjoy looks very useful thanks just wish I had a printer to get a hard copy.