Hi,
I have been diagnosed with MPN since February 2022 and have full on ET and now early MF. I have found the weight loss extremely difficult and I also have chronic venous insufficiency that after scratching excessively I now have two beautiful leg ulsers on my left leg to add to a previous blot clot in each leg and unfortunately in May I endured a pseudo aneurysm in the right leg. The fact that I hear a many number of people who have lived with various blood cancers and have been on longer journeys than myself is very important to me and I will be able to relate them with this great new knowledge that I have found. Google is a great resource for many things but not your personal health conditions, but your experience and knowledge will help me considerably. Thank you all. John.
Hello @Jon72 and welcome to the world of blood cancers. You were diagnosed 8 months before me, as my ET JAK2 was only diagnosed in October 2022. It is certainly a minefield and a learning curve, but this website is invaluable for support, advice and friendship. It sounds like you have already suffered considerably, but we are all here to help you cope with the hardest of times, and even on your good days, we are here for you. Take heart. We are all in this together.
Hi @Jon72 yes, welcome to our forum and @Chris1 has already welcomed you so well and set the scene.
I will copy your post to the Blood Cancer UK nurse advisors for you @BloodCancerUK_Nurses
Your leg ulcers sound really nasty and i presume you are getting medical attention for them so your medical team know about your weight loss and excessive scratching and other leg problems.
Have they any advice?
Take lots of care and I look forward to hearing more about you.
@Jon72 - so, so sorry you have had this to contend with. That is not easy.
My worst fear in accepting treatment was ulcers, of the mouth, thus making singing and singing teaching difficult, and of the legs, as I have lymphoedema, and I wasn’t too keen on the possibility of stomach ulcers. I did two things to mitigate against these. 1. to drink 2 litres of water a day, which I do religiously, and 2. to always have food before taking Hydroxycarbamide. the third thing is to walk as much as possible, with a goal of daily, but that doesn’t work out too well. My distance goal is not high, and I fail on frequency!
I think these things have helped me, but I have no real way of knowing. I don’t think thay have done me harm.
Let us know how you get on on this difficult journey. All the very best, and I hope you have good help for your leg ulcers.
Hello @Jon72
Welcome to the Forum. Thank you for posting and sharing your experiences. I hope you don’t mind me jumping in and commenting, as I can see you have already had some great replies from others.
Sorry to read about your symptoms and the difficulties you have experienced.
I just wondered if you had managed to discuss the weight loss with your GP or Haematology team? There are specialist oncology dieticians at most hospitals now, that can support you and offer advice (and supplements if needed), you may need a referral from your GP or Haematologist or specialist nurse (if you have one). Please do ask, they are there to help. It is important to be the right weight and be able to eat well, it makes a difference and adds to improving your overall health and wellbeing.
In regards to your leg ulcers, if you don’t mind me mentioning, they can be a side effect of Hydroxycarbomide. Are you on this treatment? Hopefully, if you are, your Haematologist knows about the ulcers. If they don’t, I would strongly advise you let them know as soon as you can, please don’t wait until you next appointment. I hope you are getting the right care and follow up for your ulcers with a vascular team. Were you told the itching was due to Hydroxycarbomide, or was this all before your diagnosis?
I am sure you will gain lots of knowledge (and possibly tips/ideas) about ET and MF on from this Forum. It is a wonderful resource of experiences and shared information. Personally, I think it’s better than Google 
If you would like to talk any of this through please do get in touch: Blood cancer information and support by phone and email | Blood Cancer UK
Please keep us posted on how things are going for you.
Best wishes, Heidi.
Hi. Can anyone tell me if getting a migraine type aura is a symptom of ET. Thanks. Chris.
Hi Chris yes migraine aura, silent migraines, and visual disturbances can all be part of ET (I have ET diagnosed 16 years or so ago) - if it happens often/regularly do mention to your treating team - I had them badly prior to diagnosis not knowing why of course, once diagnosed and on treatment they became rare, it tends to lessen when platelets are lowered and in more normal ranges - although can happen still when they are as well 
I still get it on occasion or patches of them for no obvious rhyme or reason but tends to let me know rest a bit and increase fluids. All the best
Hi @Jilly20. Thanks for the info. As I also have other spinal and neurological problems, I was wondering if it is the ET causing it. I will mention it to my neurologist when I see him at the end of January, and also my haematologist when I see him again in February. I do drink plenty of water and other fluids, and I am resting enough as the fatigue makes me rest. I find looking at a computer screen will trigger the aura, and sometimes I can go for ages before getting clusters of them. Thanks again. Chris.
Hi @Chris1 - I had some spectacular coloured migraine auras, which were, I thought, an extension of migraines I used to have. They made periodic appearances about 3 years before I knew I had ET. I also put it down to working on the Botanical Art Diploma, in a studio lit by 4 daylight strip lights. I have not had them since I began treatment on Jan 1st 2022. I thought they were amazing in structure and colour!
Hi @Modesigns. That’s interesting. I used to be a migraine sufferer in my earlier years. My aura is not in colour, just the type you get with classic migraine. I had a fall in 2021 and jarred my neck badly where I had previously had neurosurgery. It triggered the aura non stop for three months, and then intermittently. I thought that was the cause, but now I am wondering if it is also linked to the ET, but exacerbated by the fall.
@Chris1 - interesting, my initial visual migraine disturbances were more like clear water, such that it was impossible to see the blackboard…and my recent ones were big multiple layers of zig zags in kaleidoscopic colour. I was quite fascinated by them and would like to have been able to capture them! What was going on in my brain at the time would be very interesting to know. You have been on a long health journey.