Good morning friends lm due to speak with my doctor this week Thursday and still finding it difficult to not sound over emotional with physical complaints which don't seem to help me understand my condition well enough. I want to know what kinds of questions l need to ask about my ET. At the moment he is aware that lm unsure about my meds and adjusting to side effects of Hydroxy, but l would like more information from him about my body with this condition,lm unsure how to best phrase things so l can feel more informed about what's happening inside that may have contributed to ET.
Hi there. Have you checked out the MPN Voice website? There is lots of helpful (and reliable) information and advice about ET as well as plenty of patient experiences.
Understanding as much as you can about the condition will help you clarify in your own mind the kind of questions you want to ask your doctor. You might also find it helpful to have a conversation with the CNS (clinical nurse specialist) if the department has one.
MPN Voice can also set you up with a ‘buddy’ and that might help you address the more emotional side of the feelings you are currently experiencing. Wishing you all the best.
Thank you so much friend, yes l do have a wonderful MPN buddy now and magically received good information from them just in time for telephone call with proff an hour amazing. This call was great as l was better prepared, It whent very well and we arranged a virtual online meeting very soon,l couldn't ask for better. As they say friend forwarded is forarmed.
Hello ...our conditions are not well known or understood... even the professionals knowledge is limited .... I’ve asked so many questions to heamo s ‘s over the years ... very few answers as they don’t know ...
I am becoming my own Dr ... I have changed diet & am now reading a book by Dr Gabor Mat’e .... his views make more sense than anyone else ... I have heard so far ...
I am truly trying to heal myself as I believe stress ...childhood trauma are the cause of my poor health ....
I feel new hope reading this dr’s views ...I’m now listening to me much more than I ever have & really looking after myself .... I believe the answers to good health lie within ...
I know this is my view ...I arrived here after years of thinking ET just happened to me because of genetics...I now know this is not true ....so if it’s not genetic ...what is it ?
I want to deal with the cause , not the symptoms.....
I hope you get the answers you are seeking ...but remember the people your asking have limited information...
I never go to an appointment without a written list of questions and issues. I usually give the doc the list too. Basic Structure
Treatment Goals/Priorities (Pretty static, but lets the doc know how I will make decisions)
Treatment Approach/Philosophy (Pretty static, lets the doc know how I will make decisions)
Updates (All health issues - all other issues first - then hematology)
Treatment Decisions/Questions (include review of side effects from current tx)
It helps to review the side effect list(s) for HU to remember what is/is not likely related. Check more than one list as they are not all the same.
Hope that helps and you get the information and support you need.
Thank you so much l will be using your check list as a guide when l have my video call with the Proff next month,you are so helpful and knowledgeable l am grateful for your and many others who share here. Adiewon
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