Hi Suzanne, thank you. The consultant said he would refer me to a dermatologist to help with the itching skin. Not sure how clued up he is with this as he said it's a waiting game to see what eventually shows, if anything. Not that I can go to any hot countries but if I was to, he advised only a short flight of 2 - 3 hrs max. There are other symptoms of headaches, blurred vision and fatigue. They say to go to hospital ASAP should I become unwell, most days are hardwork, tiring. Feel sorry for everyone living with this, but yes never give up hope.

Hi Ellen. First let me say how sorry I am to hear of your suffering. Living with the unknown is a very lonely place to be. But even though the struggle itself is exhausting, Dan's advice is spot on: it's important to become as informed as possible about possibilities and results. Given NO MPNs were discovered, did the doc talk about pursuing causes of reactive thrombocytosis? High platelets coupled with high white blood cells generally indicate inflammation, which could be caused by any number of things other than MPNs, most of which are less onerous. Also, while it may not identify the underlying cause, a visit to a dermatologist could help find ways to ameliorate the symptoms. Please don't give up hope.

Hi Dan, not sure if he is MPN specialist, I will check this on my next health check in. Currently thinking of going private to a specialist but referral would be a better and cheaper option.
Thank you for the help, I did assume he would be trained in all areas of this, agree it is complex due to no known cause

Hi Ellen - Is your Hematologist/Oncologist an MPN Specialist? If not, I recommend seeing one. A well known and highly respected MPN Specialist named Claire Harrison is a physician at either Guy's or St. Thomas' hospital in London. If you have healthy, normal bone marrow with no indication of an MPN, and you do not have one of the driver mutations (JAK2, CALR, or MPL) then it is puzzling indeed. Especially because you present with a couple of symptoms typical of MPN. Elevated platelets can also be due to reactive thrombocytosis, which is caused by an underlying medical condition rather than an acquired gene mutation. Are you able to access your medical records? The physicians notes and interpretation of test results can provide useful information you can use to better understand your condition. Best wishes -

Can you get a second opinion? Perhaps a different hematologist can help.