Spaced Out?

[Jennifer1974]

My last cbc 3 weeks ago showed normal blood counts for everything except my platelets which were 616. Since then I've been diagnosed with MPN JAK 2+ ..working diagnosis of thrombocythemia. Since I found out about my JAK status I've felt worse...the latest symptom of feeling spaced out like my head is not attached to my body. This has lasted a day or so. I'm trying not to panic. Is it possible my platelets have skyrocketed? I'm only taking aspirin...I'm about ready to beg for more drugs. In the meantime I'm dragging myself to the gym in hopes that my blood just needs to get moving.

[Mazcd Partner MPNVoice]

Hi Jennifer, I am sorry to hear that you are feeling like this, you will probably find a lot of people have and still do, feel like this sometimes with their ET, I know that I feel like it sometimes, I tend to just not worry too much about it, easy to say I know, and relax as much as I can, try not to rush around too much, go out for a walk to get some exercise and fresh air and wait for it to go away, others on this forum may have some other ways of coping. It does not necessarily mean that your platelets have risen, and platelets go up and down all the time which is why you will be monitored with regular blood tests. You should mention theses symptoms to your haematologist at your next appointment so that they are aware of how you are feeling. I do hope that you feel better soon. Best wishes, Maz.

[Jennifer1974 in reply to Mazcd]

I'm worried that I'm suddenly anemic. I guess this disease takes some getting used to...I feel totally out of control.

[Mazcd Partner MPNVoice in reply to Jennifer1974]

it does take some time to get your head around it all, if it would help you I can send you some of our information booklets about ET and the different medications for it, just email me your address to [e-mail] and if you would like to speak to someone who has ET I can put you in touch with a buddy, a buddy is someone who has the same MPN as you and takes the same medication, they will have been diagnosed for a minimum of 2 years so have a good understanding of what it is like to cope with living with ET, let me know. Your haematologist and GP will keep an eye on your blood counts and will let you know if there are any changes, but if you are worried then I would suggest that you ask to speak to either your haematology clinic nurse or your GP about your blood results. Best wishes, Maz

[Jennifer1974 in reply to Mazcd]

Ok. Thank you. I still have a hard time talking about it. Talking about it makes it real

[Hidden]

Hi Jennifer, it could be the effect of the diagnosis that's causing you to feel so lightheaded, especially if it only started after the Jak2 was confirmed. It's a lot to take in so be kind to yourself and allow a little time to get used to the idea. We all get shaken up when another label gets added to the list so try not to panic. Hope you feel better soon, Christine

[Jennifer1974 in reply to Hidden]

I'm trying to be rational. GP has been tracking my platelets for 5 months and I've felt fine. It has been since I've went to the Hematologist 3 weeks ago I feel worse.

[Aime]

Hi Jennifer, every sympathy as to how you are feeling and totally understand. I have PV and go through the spaced out, or "brain like porridge" feeling when my blood is getting thicker. Obviously with ET it is different re blood thickness but all of us on the forum have lots of symptoms in common regardless of which MPN we have.

As Maz says tell your haematologist how you are feeling, drink plenty of water, get fresh air and eat as healthy as possible. BUT treat yourself, you deserve it, get some rest too and above all catch the "e" hugs that are sent with this reply so you know you are not alone.

I think once I went to the haematologist my polycythemia became very real and in a way it was a relief to get a diagnosis of what was actually wrong with me and that it could be treated. My relief was like a "balloon deflating" if that makes sense and I was totally exhausted after that. Our MPNs can be a bit like being on a roller coaster but now you have found this forum, you can be assured of medical advice through Maz and lots of support and empathy from your new friends on it. Kindest regards Aime xx😺😺

[Jennifer1974 in reply to Aime]

I had a couple higher than normal RBC, Hb, and Hct counts a couple months ago (just outside normal) but they have gone back to normal. Its all so terrifying. Thank you for sharing

[Paul42]

Hi Jennifer.

As others have said this could be a reaction to your diagnosis. Its a massive thing to be diagnosed with a medical condition and our bodies do have strange ways of deaing with things, especially of things seem to have got worse since you found out you were Jak2 +.

Firstly, dont let the JAK2+ thing worry you, they have found whats causing your condition, thats a good thing not a bad thing. Put it this way, something is causing it in everyone so its sort of better to have got that out the way and at least you know what it is.

I doubt very much your platelets will have rocketed over 3 weeks, especially if you have been monitored for a while, how often are your check ups going to be?

Being spaced out could be connected with being anaemic but had you been heading that way it would have been picked up in your blood tests im sure too, these sort of things rarely happen overnight unless you had had significant bleeding, and by significant im talking to the point you would have noticed something.

You can actually have low iron (ferritin) levels without being anaemic, did you get a check on this as this could have a similiar effect? I am sure you would have with a full count though.

How have your sleep patterns been? Are you eating ok? I honestly think its more likely to be something to do with the shock of diagnosis and how it can affect us mentally. Especially if you havent had symptoms like this before.

Make sure you drink plenty of water and keep hydrated too.

The only final thing, and Maz if you read this can you chip in as i might be well wide of the mark, but if Aspirin is new to you could this be the cause? I know it thins the blood (thats what its meant too) and can lower blood pressure, if your blood pressure has gone down this could definately cause a lightheaded feeling.

As Maz has said discuss with your constultant, and if you are really worried try and get an earlier appointment, especially if yours is a few weeks or months away. Dont feel afraid to ask questions, if you have them write them down as when you are there its easy to forget something. Call them if you have concerns, thats what they are there for.

Hope you feel better soon, and dont be afraid to post any question on here.

Paul

[Jennifer1974 in reply to Paul42]

I sleep for about four hours and then am awake for two..maybe I might get another he before I wake up. I'm worried I might die in my sleep..it doesn't help I am a high anxiety personality. Maybe it is the aspirin..before this I rarely had headaches in my life..rarely took a pill for anthing except my thyroid med ( lost my thyroid due to thyroid cancer at 26). Thank you for your response.

[Paul42 in reply to Jennifer1974]

Hi

A lack of sleep wont be helping, but its quite normal to be worried by this, we have all been there and still are so fully understand.

It does take time to come to terms with it and fully understand what it is we have got, i was diagnosed 3 years ago at 42 and was convinced at first i wouldnt see 45, the internet is great but there is a lot of misinformation out there too.

Talking to people definately helps, Maz does a great job and is involved in organising local forums which can be a good place to meet people and chat. It would be worth looking to see if there is one coming up near where you are.

Paul

[Jennifer1974 in reply to Paul42]

Which one of these lovely diseases do you have? When did you start feeling symptoms? I was ok when my platelets were about 500s..now that they're in the 600s I'm starting to not feel very good. I can't imagine there are people in the millions that don't feel a thing! These diseases must be very unique to the individual. I wish I could excuse this evil clone from my body!

[Jennifer1974 in reply to Jennifer1974]

I mean "excise"

[Paul42 in reply to Jennifer1974]

Hi,

I have PV so produce too many red blood cells.

The first i was ill was i had to go into hospital as i was very anaemic, my hgb was 5 and should be 13.5 - 17.5. They discovered i had a 'very' enlarged spleen and i had loads of tests.

Once my blood levels got back up i felt fine again, the reason i was anaemic was i have got varices in my stomach which had bled, these have been caused by the additional pressure caused by my enlarged spleen.

Looking back i know ive had it for about 10 years as i had felt my spleen, but when i went to the gp they told me not to worry as they said it was muscle.

My sister has the ET flavour, her platelets are around 900. She has had hers for about 13 years now, she does get some itching sometimes but mostly she is fine.

I do think if you can get to talking and meeting people with one of these conditions it will help you so much, yes they cause us challenges but lots of us have full active lives so, whilst i know its easy to say this, try not to stress about it too much. You are right though they are individual, and do affect people in different ways.

Paul

[Jennifer1974 in reply to Paul42]

What a scary ordeal. Are you JAK2+? Your sister has ET? Is she JAK2+ as well?

[Paul42 in reply to Jennifer1974]

Hi

Im JAK2+ yes, 95% of PV patients are, and its about 50% i think for ET patients.

I am not sure if my sister is or not, her diagnosis came before the discovery of the JAK2 mutation (2005) so she has never been tested.

My sister and I have a bit of a different approach to our conditions, i wanted to know as much as i could about it, go to the support group etc, but she sort of tries as much as she can to forget she has it.

She only has to see her consultant once a year, i go at least every 12 weeks. I am not saying her approach is bad, its just different to mine. I have told her i dont like the fact she only goes once a year, but so far its not caused any issues.

I dont think at the moment being Jak2+ or not really affects your treatment etc, it may do in future as new drugs come out though. There are JAK2 inhibitors out now (ruxolitinib) however these are currently only approved for MF on the NHS, and PV patients may be able to get on the cancer drugs fund (I am on this). It is still on trial for ET patients.

Jak2 inhibitors however do work for non JAK2+ patients too.

Paul

[Jennifer1974 in reply to Paul42]

Wow. 2 rare diseases in 1 family. I understand your sister's approach...I find myself wanting to forget about all of this . She must feel pretty well to only be seen 1x a year! Thank you so much for sharing. This forum has literally been my lifeline this past week!

[Hidden]

Hi Jennifer,

I was diagnosed with ET Jak2 negative in April. My platelets did spike in a short time, but studying my medical history with my doctor helped me to understand that my counts have been steadily rising for the last 5-6 years (989 at last check). Since my diagnosis, I've felt some relief, because I'd been having symptoms (itching, headaches, absentmindedness) for years, but just ignored them or thought I was weird. The symptoms come and go and the doctor assures me that they do not correlate with a change in the disease. I'm learning to go with the flow, but it is an adjustment. Exercise and hydration seem to help me the most. I think the best we can do is take things as they come and keep an open dialog with our doctors.

Good luck and try not to worry!

Jason

[Jennifer1974 in reply to Hidden]

Thanks for your reply! Do you ever get brain fog? My platelets are only 625 and I have been feeling lightheaded. Now I'm starting to think it's the aspirin...this symptom didn't start until I started taking aspirin every day

[Hidden in reply to Jennifer1974]

Hey Jennifer,

Sometimes I do get lightheaded or dizzy. I have had those spells in the past, before starting aspirin, so I don't think that's the cause in my case. When you say 'brain fog' I am thinking absentmindedness - I've got that in spades, unfortunately. That definitely did not come on with the aspirin. I don't think it came on with the ET either - I'm just wired that way, but the disease doesn't help!

[Jennifer1974 in reply to Hidden]

I've stopped aspirin for a few days and the lightheaded feeling has ceased. My hematologist only put me on aspirin because I'm trying for another baby...otherwise he said I didn't need any meds yet. If I'm still feeling better by next week I will call and see if I can take something other than aspirin or maybe only take every other day. I haven't even had a headache or tingling..

[Hidden in reply to Jennifer1974]

That's great news! Maybe you're just more sensitive to aspirin. I'm glad the symptoms are gone!