Baffled

[Kelly2]

Unfortunately I have noticed more than once that people here post something that bothers them with their illness without giving full details i. e. counts, exact illness, PV, ET, and other so that one can find similarities and identify or answer. To write asking for details concerning the posts is time consuming so I suppose many don’t even bother. Such a shame as it could potentially help people.

[socrates_8]

Hi Kelly...

I have noticed every so often that a few people are not so specific, and there could be a plethora of reasons as to why that might occur...

... I can think of many...

However, for all my searching I am yet to find a Forum for people w/ MPNs that is even close to as good as this one is... , in my view...

I guess many of us are all at different stages of our MPN journeys, and some can be more articulate than others. A gentle nudge to the post concerned is an easy way to learn more...

Time is important to us all but so too compassion and empathy, is it not?

Best wishes

Steve

(Sydney)

[Kelly2 in reply to socrates_8]

I understand that people need comforting, I did too, but

please see my response below regarding this comment

when you say I take this drug you must explain why, what other health issues you have, your age and also when using abbreviations many people including me I am sure do not understand.

it is not necessary for anyone on this forum to give information that they do not want to

My doctor tells me don’t read posts because every person is different and you just get scared. Anyway I just wanted to put in writing what I feel when I read many posts.

Be well

[socrates_8 in reply to Kelly2]

Hey Kelly...

I have sent you a private response to your inbox...

Have an awesome day

Steve

[Mazcd Partner MPNVoice in reply to Kelly2]

Hi Kelly, whilst I can understand your frustration at not always knowing the abbreviatinons used etc, you must respect that not everyone who posts on this forum wants to share everything on here, like their age, or other health issues, it is up to each person to share with us what they feel they want to share about their MPN, their medication and their symptoms etc. It can take a great deal of effort and courage for some people to post on this forum, especially when they are newly diagnosed, and I do not want them, or anyone, made to feel that they have to give any information that they are not comfortable sharing with others. If you don't understand anything then you can always ask the person and if they want to tell you, they will. Maz

[Kelly2 in reply to Mazcd]

No problem Maz! Of course nobody is forced to do anything they don’t want to. This is a personal comment on how I see things.

[Ebot]

Hi Kelly. I wasn’t quite sure whether you meant that people used inaccessible abbreviations or weren’t detailed enough about their individual profile when posting.

So first, I guess by the time people post here they have some familiarity with MPNs and know what ET, PV and MF stand for. More than that I suspect none of us have any inclinination to write out polycythemia vera, essential thrombocythemia and myelofibrosis in full! (And spellcheck doesn’t work on these!)

Second, I find people posting for the first time are often quite detailed about counts and history etc. For those of us who post replies fairly regularly we tend to respond with information relevant to that original poster’s query. And when we post ourselves it tends to be specific to a new development. You can always track back on each person’s history of postings to get the backstory.

Third, it’s often too long and tedious to submit a full medical history and it may just be a distraction from the thing you want to find out about - for example how to manage the heat or deal with itching.

And finally lots of issues apply across the board to all MPNs, and although each of our MPN journeys is unique and constantly evolving we share very many common experiences. If you’re unsure of something in a post, you can always ask. I’ve found people really responsive. Wishing you well.

[Kelly2 in reply to Ebot]

I meant both. For instance what is CFS??

[Ebot in reply to Kelly2]

My friend Google says ‘Chronic Fatigue Syndrome’. Does that fit given the context?

[Kelly2 in reply to Ebot]

Thank you. I didn’t even know this existed.

[Ebot in reply to Kelly2]

Well you prompted me to check out CLL and CNL both of which were mentioned by a recent poster. (Chronic Lymphocytic Leukaemia and Chronic Neutrophilic Leukaemia). I find having to do the occasional bit of online research yields some really interesting results. (Whether I can retain any if it is quite a different matter!). I agree though it can be helpful if posters spell out / explain new or unusual terms.

[Kelly2 in reply to Ebot]

I am glad that you understood my point. You had time today to google them but not all of us have this time and some will not bother.

Be well

Kelly

[Wyebird in reply to Kelly2]

If I don’t understand abbreviations I just google often that way I get lots of info.

[Tico in reply to Ebot]

I totally agree wiv everything u say

[Dldtx]

I know when I was first diagnosed I had no idea what to ask. Your right adding as much as possible will probably result in more responses. I didn’t know about levels or symptoms and especially all those damn abbreviations. Only through avenues such as this have I had to learn just what to ask and what to research. I think this is a great place to find answers from people who are experiencing the same condition versus doctors or some kind of professional telling me what I should feel because some numbers behind those abbreviations dictates it. I do go to the doctors to routinely have all those numbers checked so I can research them and ask what I hope are appropriate questions.

🤠DLD

[Mackydee123]

Hi Kelly

Most people give detail of their illness on their profile, if you click on the posters avatar it will take you to their profile and you might see what you want to know there under their pic 👍 if you click on it it expands too if there’s more info! then you can just back out to the post again!

Kerry 😊

[Kelly2 in reply to Mackydee123]

Thank you. Indeed this way saves you time!