Hi all,
Apologies for sounding grumpy but it all got a bit arghhhh last week.
Diagnosed with Essential thrombocythemia (ET) (Jak 2) 18 months ago, been on Hydroxy ever since, increasing dose as platelets still going up and not down as they are supposed to be (rebellious platelets), couple of episodes of double/blurred vision episodes so CNS suggested speaking to GP, fast forward a few weeks to last week, GP does urgent referral to TIA clinic, superb service within 24 hours to this one stop shop, thankfully no TIA and then consultant says…are you aware you have already had a stroke?
I think I would have fallen over if I wasn’t already sitting down, all he could say was that it was longer than 2 weeks ago, now need follow up tests and changed blood thinner medication.
The only thing i could put it down to was severe headaches, like i have never had in my life back in early May, would I have gone to my GP or even A & E for headaches, no of course not, but it has now made me more self aware as tbh it scared the proverbial out of me.
On top of all that I have a raging toothache and they said i need to stop the Clopidogrel for a few days so hopefully they can take the thing out!!
Sorry for moaning but it just all got a little bit to much
Oh @KT1609 I did relate to your post.
You are fully entitled to a good old moan or actually it was perhaps a factual diary of events.
This time last year I started with thinking I had problems with one organ of my body and ended up finding I had something wrong with every organ I had nearly.
Yes, actually posting on here felt quite therapeutic to me.
It felt that I was on a rollercoaster that was hurtling out of control, yes,it really was scary.
Raging toothache must be absolutely so painful, be ever so kind to yourself and please do keep posting how you get on @KT1609
Hello @KT1609, just wanted to pop in to say how that all sounds exhausting and terrifying and I’m really sorry it’s all going on, fellow Myeloproliferative neoplasms (MPN) survivor. Wow what a lot of sudden news. Moan away, I say!
Like @Erica says, I relate to your experiences. Thank goodness for your referral to the TIA folks. Have they said there’s anything to look out for in future?
One potentially positive thing that sprung to mind is that perhaps you were saved further stress by not knowing you’d had a stroke? I know I’d rather not have known I was having my heart attack years ago.
Let us know how it goes with adapting to this news, and changes in medicine. I wonder what blood thinner you’ll take? I have an aspirin every day since my heart attack with no apparent issues, should that be of interest.
Hope the tooth stops being such an aching pain too!
KT1609 Sorry to hear you had such a bad week. How scary to hear that you had a stroke. I Hope you get some relief from that toothache. You are dealing with a lot take care. Best wishes. Liz59
Hi @KT1609
That all sounds very frightening for you but thank goodness it’s been diagnosed now and I hope you haven’t been left with any debilitating symptoms?
I too had blurred vision and some numbness down one side before I was diagnosed with Essential thrombocythemia (ET) / it was put down to a silent migraine but my consultant says now that it was probably a TIA- unfortunately high platelets cause clots which is why they need to reduce them. Have they suggested interferon to you?
I think a good moan does us good and this forum is perfect for it!
Oh goodness @Gillyj, you’ve also likely had a TIA?! The more I learn about these MPNs the more I think we’re so fortunate when we find out we have them and live to tell the tale considering there’s so much that can go wrong!
I’m glad you’ve had blood tests done @KT1609. Now the waiting game again! I’ll keep my fingers crossed that you get great results, and your extraction goes well this week. Maybe tell the dentist about your bleeding risks just so you know they definitely know, and ask about painkillers too—my haematologist tells me to use paracetamol for aches and pain rather than another NSAID, I’m sure you’ve got this!
When I was first diagnosed my consultant told me to take responsibility for my condition.
I did not realise what she meant at the time @KT1609 but I now realise and take the responsibility to tell other hospital specialisms and opticians/dentists/ hairdressers/ chiropodists etc. etc
I will be thinking of you on Thursday, be ever so kind to yourself and please do let us know how you are doing.
Hi all,
I just wanted to give you an update as you were all so kind and caring when I posted the moaning post.
Tooth extracted, no more pain - YAY!!! Had to stop Clopidogrel for a few days before.
platelets are still increasing so still rebellious, I’m sure it will all get sorted at some point.
I do have some minor affects from the unknown stroke but I ignored them at the time, makes sense now though and nothing I can’t cope with among everything else, made of strong stuff lol.
Final bit, due a cataract op on Monday so another little thing ticked off the ever increasing list.
A great big YAH!!! @KT1609 that you have had your tooth extracted and no more pain, wonderful.
Sorry about the platelets.
Isn’t it interesting when you look back in hindsight and can see the warning signs of something, in your case your stroke.
Yes, your cataract op is another thing ticked off your ever increasing list.
You certainly are made of strong stuff.
Please do keep updating us and be kind and really look after yourself.