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[Grumpyfairy]

Hi all, just wondering if anyone gets strange pains in chest and left side. I take Hydroxycarbamide and aspirin. Have had lots of heart tests but nothing found. Still quite new to this and struggling for answers,

[jane13]

i guess someone would have noticed if u had an enlarged spleen?

[MCW22]

I get pain in my left side. It started a few months ago as an intermittent stitch. My consultant said she thought it was my spleen as she could feel the tip of it. She said it was 2cm below the costal margin. I haven't been examined recently nor had any scan but it is now more persistent and covering a larger area. Have another 5 weeks to go till my next appointment when I will ask about it again. That will most likely be what your side pain is. A normal size spleen can not be felt on physical examination as its covered by the ribs.

Carol.

[Aime]

Hi, if you’re not happy with what you’re being told, ask for a second opinion. Ask for an ultrasound to rule out spleen and anything else. It may be as simple as muscular but it’s important to get thoroughly checked out. Kindest regards Aime xx😸😸

[Grumpyfairy]

Thank you for your replies, very helpful. I’m sure I’ll be putting more questions up, as I said in my introduction, since diagnosed I’ve really struggled to come to terms with it, and feel as long as my platelets are steady my doctors happy. Can I ask if any of you still drink alcohol? Not that I’m a alcoholic but I struggle to have 2 if that, and I get palpitations. Miss sharing a bottle of wine with my husband on a Friday night.

Jackie x

[Aime in reply to Grumpyfairy]

Hi Jackie, I don’t drink alcohol any longer as even after one glass of wine I get a splitting headache and feel terrible, including a churning stomach.

I used to enjoy an odd glass of wine but it’s not worth it now. Kindest regards Aime xx😼😼

[Grumpyfairy in reply to Aime]

Hi Aime, thank you for your reply. Yes I find it doesn’t agree with me, not sure ifs the ET or the medication, probably both. When I do have a drink I have a pint of water with it, in my mind feel like I’m diluting it! Regards Jackie x

[Aime in reply to Grumpyfairy]

Hi Jackie, I’ve tried drinking large glasses of water as well as a glass of wine but still get the headache, etc. Kind regards Aime xx😹😹

[stillkicking]

Good Morning/Evening Grumpyfairy!

I'm writing this in Springtime NZ with the beginnings of a dawn chorus outside, which is probably very confusing from a Northern Hemisphere point of view! Jackie I love your "Grumpyfairy" name, it gave me a smile when I peered through the new posts on the forum. I see from looking at your profile that you have been diagnosed for about 18 months now, and I quite understand the struggle to come to terms with the diagnosis, as it has been a bit of a roller coaster ride for me too, not only with the impact of the disease itself, but also the problem dealing with medical people, who range from those who only care about numbers on charts, to those who deny that, in my case ET, has any noticeable symptoms! Glad that you've found this forum, as it is wonderfully helpful.

Regards alcohol, I have found my tolerance for it has become nearly zero now. At best I can manage a glass of wine, but so easily get a headache from it now that I hardly bother trying. Annoying! I notice that some people on the forum still manage alcohol OK, but others don't, it seems like it is quite an individual thing.

Best Wishes,

Peter (somewhat grumpy this morning because the cat kept me awake in the night!)

[Grumpyfairy in reply to stillkicking]

Hi Peter, In NZ, thank you for your reply. Yes it’s a nickname my husband gave me many years ago and it’s stuck! Yes totally agree, when I go to have my three monthly check up, as long as there happy with my platelets, I’m good to go. If I ask about symptoms or pains, told to go and see my gp, very frustrating. Yes the forum is being a great help, just being able to talk to people who understand is such a pick me up. Regards Jackie

[JSKly]

Hello Brumpyfairy.

I get chest pains when my red cells are small and can’t carry the oxygen I need for an activity. You don’t say what your readings are but that’s something else you can check with your hem.

Regarding alcohol, I can have just one small glass of wine now and again. But when I do have it I may or may not enjoy it. I can’t tell if it is medication.

[Wyebird]

I agree with Aimee. Query the state of your spleen. Good luck

[Heidi-W]

Hi, the other thing to consider is gastritis with you being on the aspirin. Hopefully you are on omeprazole or lansoprazole or similar to protect your tummy from the aspirin's gastric irritant affects. If you already on one then great and I'd def see if they can request an ultrasound to check out your spleen size and also have quick look at your liver/gallbladder too. Good luck.

[Grumpyfairy in reply to Heidi-W]

Hi Heidi, thank you for your reply, I don’t take anything for Gastro issues, my aspirin are the coated ones, will they not be enough? And yes hoping to get a scan booked in. Thank you again. Regards Jackie

[Heidi-W in reply to Grumpyfairy]

Hi Jackie- if the scan comes back ok re your spleen etc it might be worth asking your gp for a 1 month course of the omperazole or lansoprazole to see if helps with symptoms in case is linked with aspirin despite being the enteric coated ones.. good luck

[Grumpyfairy in reply to Heidi-W]

Thanks for your reply Heidi, I’ll give then a try now while I’m waiting for scan appointment. I’ll try anything to be honest

Regards. Jackie x

[mustabshra]

I have , I have I have. Its so frustrating no body seems to understand .My all tests ECgs everything comes fine.Now I feel my dr. And my husbabd also think I am faking. I feel chest congestion on left side, breathlessness and for no obvious reason. Only on plavix .

[Grumpyfairy in reply to mustabshra]

Yes I find it very frustrating and get the impression my doctor doesn’t believe me! I’m sure he even rolled his eyes when I walked in the other week! Just want to get to the bottom of it but I’m going to try what Heidi suggested and arrange a scan on my spleen. Will let you know.

Regards

Jackie x