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MPN Voice
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New haem, new diagnosis?

Hi Guys, just a quick update. On bus travelling home after a worthwhile consult with new haem yesterday. It turns out I may not have polycythemia Vera but a different version. Think filled up 8 tubes of blood tests and go back in 6 weeks to get all results. At last someone has listened and was so understanding and felt I was believed cos lately with joint issues I was beginning to suspect they thought I was making it up. Some of my bone pain may be caused by this too but all will be revealed in 6 weeks time. Hope you're all as well as you can be and thanks again Eleanor for all your support last night and all of you on the forum for listening in the lead up to this appointment. I'm so glad I asked for a second opinion. Aime xx😺😺

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The moral of this is always trust your gut instinct. Well done with following through with the second opinion. We all support each other. This is why this forum is so great. ❤️

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Well said Eleanor! X

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HI Aime i wrote to my Msp about all the pallava you were having having to come down to Edinburgh by bus to see a doctor privately and the expense of a bnb as there was no forthcoming appointment from your own consultant see at the start of our campaign did you see your own Msp regarding your hospital needing a MPN Clinical Nurse Specialists he was really sympathetic and appalled at what you had to do if you have not seen him take all the information of your MPN and take it to him or her and tell them had there been a MPN Clinical Nurse Specialist at your clinic you would not have had the expense of coming down to Edinburgh and have to pay to see a private doctor and it would also strengthen our case best wishes Nicki aka Scottishterrier ps glad your getting somewhere but not at a cost though when diagnosis could have been done on NHS

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Thank you, will do. Kindest regards Aime xx

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Hi Aime,

Glad to hear that your Consultation was a constructive one. You certainly made the right choice, especially if a new diagnosis is revealed! It will be interesting to hear the outcome.

You must feel a huge sense of relief.

Mary 😺

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Hi Mary, thank you. Yeah it will be good to get a diagnosis from a person who definitely knows what he's talking about. I was on a high and then thought - wait a minute, I'm in the uncertainty phase again but I do feel comfortable to talk to my new haem, he was very reassuring so no matter what the blood tests show, I feel I'm in capable hands. Hope you are as good as you can be. Kindest regards Aime xx😸😺

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Are you going to stick with this haematologist - or does distance present a problem?

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Not sure how many visitsmy insurance will pay for but I think I will ask to see him on the nhs, depending on blood results.xx Aime😺😺

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Hi Aime.

That's great news that your new Heamo is listening to you. Much more reassuring to know they are hearing what you are saying. Well worth the trip I would say. So pleased for you.

Regards Sandy x

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Thank you Sandy.xx Aime 😺😺

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Hi Aime,

Hope this brings more clarity to what is actually going on for you, even if it is all a bit uncertain at the moment. Did you have a BMB as well or have you had one previously?

Best wishes

Wendy x

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I haven't had a bmb which he was surprised at. So not sure if that will be a step once blood results are known or.not. Thank u, kindest regards Aime xx😺😺

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Delighted at the positive and productive outcome. Please keep us posted as to developments. Did the haem give you an inkling as to what s/he thought you might have? Wasn’t sure when you said there was a question mark over the PV diagnosis whether there was a question mark over an MPN full stop. Wishing you strength over the next six weeks!

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Hi Ebot, thank you for your kind words. I think he's wondering if it is idiopathic polycythemia but dependent on blood what next step is. Think I got enough taken for half a venesection!xx.😺😺

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Hi Aime,

I am so pleased that you had a good consultation and were believed and understood! It will be an immense relief to you to know that you are being cared for properly!

Hugs and Celebrations! :-)

Peter xx

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Thank you so much Peter. As always this forum is second to none.xx😺😺

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Hi Aime,

I’m so pleased you had a good appointment. Well worth the trip for you. I’m sure we will all be pleased to hear the outcome in six weeks. Do let us know.

Love Judy xx

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Thanks Judy, definitely worth the trip. Just updated my gp so he's all saying I might have sjorgens syndrome because of dry mouth and eyes, so more bloods soon to check for autoimmune disorders. Oh me, it's all happening. !! But good that all worries are getting checked.xx hope it okay.xx😸😸

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Yes, it’s good that you are actually getting somewhere. X

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Sorry Judy, this autocorrect! Should have read hope ur okay.xx😸😸

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Ha ha, I’m good thanks. X

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Hi Aime

Sounds like you're at a loose end like me! Have they said what they're testing for or why they dont think its pv?

I'm jak2 neg. Local haem team have sent me to Guys as they dont know whats causing my odd blood results & thick blood. Had loads of bloods taken recently & I'm having a red cell mast test in a couple of weeks.

Good Luck with your results xxx

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Hi Vicky, I’ve won’t have confirmation until the blood tests are back but it may be an idiopathic Polycythaemia instead of PV but he doesn’t think I should be as anaemic as I am, considering the very few venesections I need. I’ve had the red cell mass test in the past and it showed a larger number of red blood cells than plasma, so it is really a wait and see.

I’ve been suffering from dry eyes for a while and use eye gel from the optician. My gap has confirmed today that I have a chronic dry mouth problem too so is wanting more blood to check for Sjögren’s syndrome. My gp also wants to give me a cortisone jab in the heel because it’s inflamed and very sore to walk on. I’m just waiting for the next thing but at least I’ll get my PV (or not) sorted out. I’m jak 2 negative too but the new haem is testing for the Xeon mutations too. Good luck with your results too. Kindest regards Aime xx😺😺

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Its all so complicated and confusing isn't it. Sounds like you have a good GP. Guys told me you can't have PV if you're Jak2 neg. They have done bloods to test for all genes linked to red blood cells. I go back in January for all the results.

Good luck with your tests xxxx

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Ah glad they are doing a thorough investigation for you Aime and hope you get some answers soon. Good luck with the heel injection- are they thinking plantar fascititis? If you search re that there are exercising you can do to try and help as sometimes the injection may not be successful.. Good luck xx

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Hi Heidi, thank you for your kind reply. Yes they think it is plantar fasciitis in conjunction with whatever’s happening on top of the foot and toes. I go to a hydrotherapy pool twice a week (which my skin hates) but I do my exercises for all my bodily bits including my heels and feet. A physio advises what’s the best to do. Hope you are well, kindest regards Aime xx😺😺

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