Do I have an MPN?

[RedSunrise]

Hello, I'm new on here but have been quite obsessively reading posts for quite a while! I've had elevated platelets for 4 FBC over 10 weeks and have been referred to a haematologist (await first appointment) and I have been waiting for 2 weeks for the JAK2 mutation result. My highest platelet count has only been 502. I had a previous presumed pulmonary embolism aged 18 (39 now). I do suffer from fatigue but I've had some other stressors of late so unfortunately I have turned to an unhealthy diet and put on a good few stone over the last 18 months - this of course will not help with fatigue. I have noticed a wierd kind of whooshing in and out noise in my ears sometimes when I'm outside; I don't get night sweats per se but I am always clammy - especially hands and feet; I have also noticed tingling sensations in my hands (like lack of circulation but not pins and needles) but my hands are warm; I have had to take antihistamines every day for last few months as get an itchy throat and nose. I've had several blood tests that do not indicate any cause for the elevated platelets. Like many on hear, I just feel like I'm waiting around and I'm beginning to get impatient. So I take it my diagnosis so far is thrombocytosis of unknown cause. Thus, it could be an MPN (JAK2 result will help but not definitive). Given all my other bloods are in normal range (not symptomatic of an enlarged spleen) then am I over drawing conclusions at this stage that it's likely I have ET? Comments much appreciated

[Rachelthepotter]

Hi. Welcome to the forum: I hope you get a clear diagnosis soon. People here are friendly and helpful and I’ve found it a great resource. All the best

Rachel

[RedSunrise in reply to Rachelthepotter]

Thank you for your commentd. Yes, I've noticed how wonderfully supportive this forum is.

[dgk70]

Hi Redsunrise

I’m not sure if you have ET but the whooshing in your ears sounds like tinnitus, I would mention it to your Doctor, hopefully it’s not as there isn’t much they can do to cure it ,

Good luck 👍

[RedSunrise in reply to dgk70]

Thanks for the reply. I had thought it may be a mild tinnitus. Its not much of an issue as its sporadic and doesn't last for long so it's not really causing me any issues. It's just something that I've noticed that I've developed and read that some MPN sufferers get tinnitus. I will mention it to the consultant. Many thanks.

[kiwitraveller in reply to dgk70]

I get tinnitus early in the morning and just put some music on otherwise it keeps me awake. Hope all goes well for you

[Mazcd Partner MPNVoice]

Hello RedSunrise, I am sorry to hear you are having these problems, it can be very stressful waiting to hear the results of your blood tests and what the diagnosis is. I am afraid that we are unable to tell you what your diagnosis is, you will need to get this information from your consultant. Once you know if it is definitely one of the MPNs then we can help with advice and support. Let us know the results. Kind regards, Maz

[RedSunrise]

Thank you very much for your comments - I understand. Hopefully I'll get the JAK2 result very soon. I shall come back to the forum if I do get diagnosed. I've noticed how incredibly supportive you've been with people.

[Hidden]

Did you ever figure out the cause? My platelets are 502 as well.

[RedSunrise in reply to Hidden]

Hello. Thanks for asking - I am still Waiting my JAK2 mutation test - it's been 6 weeks now. Its very hard not knowing. My GP is fab and has sent a chaser for them. I'll be seeing a haemotologist as soon as results are in too (whichever way they go) Its not been a quick process for me.

Try not to worry - I have been obsessively reading and it's only helped to a point - it's definitely no good for stress levels. I've had 4 high platelet readings though (FBC) and various other blood tests to rule out secondary thrombocytosis. Have you not been referred for further blood tests?

Best of luck

[Hidden]

No. I had labs 3 months ago which were normal (platelets were 377). The last Wednesday I thought I was having a heart attack which ended up being a panic attack. Anyways those labs stated platelets at 502. Er doctor told me all labs were good. I only found out by longing onto my patient portal.

[Hidden]

He did check for Nucleated red blood cells and that was negative. Don’t know if that means anything...

[Georgiajen123]

Hi, did you figure out the cause in the end? My platelets are currently 528. Thanks