Hello! Second period of ET after 10 years without symptoms. The process is so slow...

[JLTINA]

Hi everyone.

I am a PE teacher and Dean of Students at an international school in London, a career which appealed to me following diagnosis of ET aged 14 and a tough time in secondary school; I feel I can now support students through the difficulties they are facing with personal empathy.

My diagnosis took a few years as my first symptoms began at the age of about 12, it was a rather confusing time and I have found comfort in reading articles where other young people have expressed similar feelings & experiences to mine, such as selective memory.

After 10 years free of symptoms and medication it was a great shock to me that following a blood sample my platelet counts were up again. This was roughly three months ago and my platelets have lowered dramatically since then through the use of Anagrelide.

Symptoms/side effects:

As a child I did not experience any noticeable side effects when taking Anagrelide but this time it has been a different situation and I remain highly frustrated by the lack of appointments and support I have received: 1 consultant appointment in 3 months, is this normal?!

I am experiencing some odd symptoms and I would be interested if anyone is going through the same:

1) Highly pixelated vision despite not needing glasses. This began in line with my increased platelets but it now remains despite the platelets dropping to normal (still on Anagrelide).

2) Pulsating temples and heart palpitations. This happens sporadically and often just through standing up in an experience like a head rush. Both temples have been pulsating for months now - like a constant drum and bass concert in my head.

3) Frequent migraines & seeing 'fireflies/shooting stars' usually after twisting my neck to look backwards.

I have various other symptoms too but these three are having the most impact at the moment so your comments and thoughts would be very welcome.

I have also sent off a request to join the buddy system set up by MPN Voice as more and more I am realising that this will be a life time issue and one which I'd like to get a handle on so I can continue my love of sport, teaching and travelling with my wife.

Thanks for taking the time to have a read. It has already proved useful just to quickly write down some of my thoughts.

Justin

[jane13]

Hi, nothing revolutionary to offer! Pixelated vision can be caused by several things (I was told stress was likely cause some 5 years before my PV eventually diagnosed) but usually on this site visual disturbance due to high red blood counts. Palpitations are v common - not sure how old u r - and I think usually harmless so long as they are not irregular in beat or missed beat. So I guess it's possible that your symptoms are not connected with ET or drugs but always the first place to look! 1 appointment in 3 months is fine if everything is stable but doesn't sound as though that's your case: in your situation I would get a soonish appointment with your haematologist (I assume the consultant u mention is a haem?) or with yr GP - get him to do a FBC (full blood count). If that's OK maybe there is another cause for the visual disturbance and headaches and he can refer u to another specialist if need be.

Good luck

[MPort]

Hi Justin

I am short of time so will have to be brief.

You might benefit from a change in medication. There are newer and better options.

I would get a second opinion from Prof Harrison at Guys (who initiated this site and who is top world haematologist) since you are in London. Privately if you can afford it. That would give you an expert opinion on your many symptoms and it would be quicker than 3 months.

You have a very interesting story which could benefit others

Good luck and let us know how you get on

Mairead

[light]

Hi Justin, I am patient with ET, diagnosed almost six years ago. These symptoms I had before i was diagnosed and even when I was put Hydrxycrbomide for two and half years different dosages. Now I am on Interferon Peg Alpha 2 taking it every three weeks and I still have these symptoms and many other, like pain in my whole body daily, muscles, joints, bones, dizzy spells, foggy brain, memory loss, many other.... etc.. So I think it is not medicine related but ET related symptoms.

Wishing you well.

[Peterwi]

Hi Justin, I was diagnosed with ET in January 2015 but I can see that already in 2013 my platelets were too high. I suffered from terrible migraine for years and also pixelated vision. After starting taking Hydrea the migraine and vision improved a lot. So I put it down to ET.

All the best, W

[JLTINA]

Hi all,

Thanks for the replies, it means a lot. Despite me somehow forgetting, I had a second appointment with my haematologist today which has given me some insight. I will in fact be seeing Prof Harrison next week as I am a somewhat extra unusual case: I am 26 now but I was diagnosed at 14. I also just found out that I tested negative for any genetic markers following the bone marrow biopsy I had a few weeks ago - as I'm sure you all know, that was fun! My bone marrow is consistent with that expected of someone with ET though.

It sounds like my headaches could be from the Anagrelide but I will be staying on a low dose of that until I see Prof Harrison (platelets now at a happy 324)!

Jane, it nice to know that the palpitations are common, it is happening multiple times each day but this could also be because I am a rather active PE teacher. My red blood cells are fine gladly; weekly blood samples at the moment.

MPort. Thanks, I will ask about differing medication when I see Prof Harrison however I am hoping that now my platelets are back to normal I may be able to come off all meds. This would also help cancel out whether the meds are causing the symptoms or not. I do hope that I'll be able to help others at some point. Maz has advised that I will need to be a member on here for 6 months and attend a forum (July 11th hopefully) before I can be a buddy.

light, it is very interesting that you have also had the pixelated vision and migraines as today my consultant remained sure these symptoms were not related. Again I'm hoping seeing Proffesor Harrison and potentially a opthamologist in the meantime will help answer this!

Thanks again! I'll let you know how it goes next week.

Justin

[Linda1950 in reply to JLTINA]

Justin you are seeing the best in Prof Harrison and lucky that you live in London . I was diagnosed with ET and Jak2 positive last Sept but I'm 66 so some of the symptoms I have like tiredness and palpitations could be age related, however it's interesting to know you experience some of them. I've come to the conclusion that these MPN's are complex and it's sometimes difficult to know if what you are suffering is related. There are new drugs around but the first line one is usually Hydroxy which many people can tolerate and stay on for years. I would recommend going to a forum, I went to the one in London last Nov and found it very interesting and informative. I'll be interested to read how you get on, is it tomorrow? Good luck.

[buddin11]

Hi Justin, I started out with ET, but have since moved on to MF. I was on Anagrelide for awhile, but had to stop due to migraines. I also have the pulsing and pressure in my temples, and sometimes the shooting stars also. How is your blood pressure? Does it drop when you stand? It turned out that was part of my problem, it's called orthostatic hypotension. Might be worth checking into. In any case, good luck and keep us informed. gail

[JLTINA]

Hi Gail, thank you. I'm hoping to stop the anagrelide soon too. My blood pressure is good but I am getting the 'head rush' sensation frequently when standing up so what you say makes sense and I'll certainly check that out.

I have seen a lot of people mention about their illness progressing. I've done some reading but I'd be interested to know if ET is almost guaranteed to move on at some point or if it's more of a rarity?

Plenty of questions for prof Harrison on Tuesday ☺

[JLTINA]

Hi Linda,

I haven't been on here for a while, gladly it is because I have had a huge turn around with much improved health and life style. I saw a Doctor called Sam as Dr Harrison was off for personal reasons and she was fantastic. All of my questions answered and finally someone who really understood ET and the treatments.

I am now off Anagrelide and within days my health was improved. No migraines, no palpitations or head rushes, and most pleasingly my depression type feelings have completely stopped. I'm enjoying things again and have been able to join a badminton club and returned to engaged PE lessons, it's great

I therefore now plan to respond to a post I saw about someone consider AG as a treatment and give them my feedback. It certainly worked well for me as a child but the side effects experienced recently are worse than how I feel without medication.

I am still experiencing this pixelated vision, all eye tests have shown me to have no problems, so this is something I still hope may improve and would be interested to know about anyone else suffering with vision problems? The other remaining symptom is pulsating temples, possibly linked to the vision?!

Thanks for all the messages. I hope you are all doing well.

Justin