MPN Voice
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A symptomatic

How can a gp say a condition like ET is asymptomatic. With rising platelets..hot sweats.. migraine.. undertreatment with aspirin. Just had a medical review and the gp.. not my own said this to me. Again.

I didn't respond not worth my anger.. would he say this if I was on Hu tablets. Some medical professionals want a kick up the backside. Many of us face this I know.

Still on my retirement course tomorrow ..8 months left.. . Not what is planned but only get one shot at this .

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Hi Heathermc

So sorry that

a) you are having these, at times, very unpleasant symptoms and

b) the response you have had from your GP

I would definitely recommend you ask for a referral to a Haematologist and also try to change your GP.

This pesky blood cancer is a life long condition so you need to have total trust in, and feel comfortable, with the professionals who are working vwith you to manage your ET . I truly believe it is a partnership between Doctor and patient when managing any chronic mefical condition and especially an MPN..

I have read on the forum that many pepes still get various symptoms even though their blood levels are within normal values . I am not sure why - I know there are many very knowledgeable people on our fourm who will know more than I but I think it is to do with the fact that even though meds like hydroxyurea may be controlling excess blood cells, the bone marrow is still working overtime . If I am wrong on this I am sure someone will put us right (I mean that in the nicest way !)

If your GP doesn't believe your symptoms are linked to your ET even when your platelets ARE raised, he obviously doesn't have much knowledge of your condition .

It is bad enough for you without having to feel worse coming out of a doctors apt than you did when you went in.

In my opinion, your doctor needs to learn more about MPNs but in tbe meantime we wouldn't take our cars to a garage with mechanics who didn't know about our car's make and model and how to maintain it, so why go to a GP who is the same .

Please try to find a GP and Haematologist who you can trust - i have both and believe me it makes so much difference.

I really hope you get sorted and keep well

kind regards

Dianne

xx

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So the migraines, gout and pruritis I had were not ET symptoms according to this GP. Interesting.

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Hi there, I know what you mean! I have ET and because I had some symptoms and I am nearer 60 than not, they put me on hydroxycarbamide, that has brought the numbers down and they are happy but I am not. The fatigue, brain fog,etc,Etc! I have had to give up my job, I feel constantly unwell. If I have a good day and do things, even if I'm careful, it has to be paid for! I have an appointment with the Haematologist on Friday, who will say it's nothing to do with the ET or the hydroxy........ this site keeps me sane.

Regards Carole ☺

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Hi Carole,. I read your earlier post re second class patients. I often have problems like that. Don' understand what's going on with the system.

I too have ET jAK2- but am being investigated for other mutations.It was almost a relief to read of your symptoms - same as me - but sorry at the same time. It's such a struggle isn't it when we seem to be getting nowhere. I know we can talk on this forum but I would really like a clinical psychologist to talk to. No chance here in Monmouthshire. I am very isolated and see virtually no one so all these feelings and concerns go round and round in my head. Do you have someone you can off-load to or do you live alone also? How do you deal with your symptoms? Today I am feeling quite despondent as I keep trying to do things but like you, pay for them. I hope things work out at your hospital and am sure you haven't bitten off your nose.. Wishing you lots of energy and sending you a huge hug. I'm 78 by the way! Mary

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Hi Mary, have just picked up your reply, thank you. I'm very tierd now so will come back to you tomorrow, luv, Carole

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Morning Mary, hope you are feeling well today, the sun is trying to come out here which always helps. I only have a small shaded garden but will determinedly find an inch of sunshine and stand there with a cup of tea. The autumn colours in the sun are so beautiful .

You asked me a few things. Well our situations are different. I don't live in a remote area, I have a husband, dogs and I am twenty years younger.

So yes I have some one to talk to, but like a lot of husbands he wants me to be well and upbeat, it's pressurising. Don't get me wrong, he is lovely, does lots and trys very hard not to mind the things that are not done. Having the dogs makes work and additional mess which often is a burden, but the company and unconditional love is worth it. There is nothing quite like cuddling the dog on the sofa when you're being forced to rest. I am younger than you Mary, which makes me think your wonderful ,coping the way you do ,you must be strong and resilient. I feel I am being ground into the ground and want to give Up! But in reality it's not an option is it? So reinvention of our life is what's in order don't you think. Easier said than done, when your way of life is seemingly set in stone. But think of it Mary, you only have yourself to please, at your own pace.

My sister is on her own and takes herself off to a art group. I have joined the saa art club and supplies on line. Very therapeutic and fun even without any artistic leaning. I don't do much because it makes me tierd!! But does stop things going round in my head.

I have been typing this while still in bed! Shocking! Not at all the way I've been brought up. But does it really matter? No. My head is ringing bad after the stress of yesterday, and I wanted to talk to you, so no it doesn't matter today. Today is go with the flow day...I hope 😃 I sincerely only want to assure you that you must believe in yourself, else you like me and everybody else on this site you wouldn't have joined. Now I really must get up and try and practice what I preach, with out over doing it or worse doing nothing at all.

Have a good day, luv,carole xx

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Hi Mary, how are you today? Well I practiced what I preached yesterday, and it seemingly did me no good whatsoever! Well is that true? I always try to weigh up whether the glass is half full or half empty. ( often after I have stopped crying. I seemed to have cried a lot since commencing treatment. ) so yesterday I drank my tea in the sunshine, I did 5mins on my excercise bike, hung out the washing, which felt like lifting weights! Did some pastel painting, cooked dinner. So I have achieved, but haven't slept well because of burning aches and pains.

I'm off to see the hematologist in a bit, I shall enjoy ( NOT! ) her telling me it's nothing to do with the disease or medication. So no doubt it's an afternoon on the sofa with my dogs. It's not sunny here today 😩 a hug & x😚to you regards carole

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Hi Carol. So lovely to hear from you again - have only just seen your note. This fatigue is a huge problem isn't it for everyone. Is it the meds. Do you think? Oddly enough have just finished antibiotics - double strength - for the seventh chest infection this year and don't feel as tired. I've heard ET can be caused by an infection which I had 10 years ago and have been ill ever since. You say you've cried a lot since diagnosis - meltdowns I call them. When I went to my surgery because I didn't understand why the meltdown was happening I was referred to the mental health people!Glad you are resting with your dog, maybe surrender/acceptance is the only way. Keep well and take care of yourself. Mary

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Hi Mary, surprise surprise! I was sent down that road as well . Saw the hematologist Friday, again she said, she thinks it is hormones, all my problems. I don't agree. Putting toxic material into your body, even small amounts everyday , is going to cause problems isn't it. I am losing strength. I am interested in what you said about not being well since a bad infection because I was very, very ill about 8yrs ago with sepsis. It's on my records though, so one would like to think that the doctors would make a connection if there was one to be made. Hope you have had a good weekend. I have over done it,so feel rough. Looking forward to putting my feet up and watching country file and strictly.

Regards Carole ☺

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Hi Carol. Replied to your blog yesterday but it doesn't appear to have gone through. Don't understand this damned I pad! Could you let me know (if you get this blog!) if you received it and if not will try again.

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Yes Mary have just received this ☺

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Asymptomatic. Hi Carol. Hope you feel more rested today and enjoyed country file. My thoughts are that an infection such as yours from years back may never have been fully cured and you may have been carrying a low-grade infection all this time which may explain why you feel ill. That's how my problems began with an infection 10 years ago and it was never investigated until a registrar at the haemo. Clinic arranged an appointment at the chest clinic. CT scan revealed I had bronchiiectisis and lung damage. It was presumed I'd had pneumonia.This discovery was made last year so all that time I'd felt terribly unwell. I've had 7 chest infections this year and have not long finished yet another course of antibiotics - double strength and I must say feel better. Still dealing with ET of course but that's a separate issue. Or is it as I've read MPNs can be caused by infection. I wonder if you could see an immunologist or someone who could check that the sepsis has actually totally gone. Not easy to trace probably but it's worth a try. Let me know how things are going won't you. Please take care of yourself . A big hug. Mary

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Oh thank you Mary for that, I do wonder about it. I am so glad you are feeling a little better as well. Big hug☺xx

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Hi Heathermc,

It is really hard coping with the very real fatigue and other symptoms that this condition brings, and I feel a huge amount of sympathy for you. I certainly struggle to work even an approximation of the hours that I once did... and am having to come to terms with the fact that I can't. I also have ET and suspect, from reading your earlier posts, that our platelet levels are fairly similar. I can see that people experience ET in many different ways, and I am sure that the quality of the platelets, the health of our arteries and blood vessels, our general health, age, the particular mutations we have, all help to tailor make the burden of symptoms that we experience. Everything I have read suggests that fatigue is the common denominator for at least 70 percent of ET sufferers.

All this would feel so much easier to cope with if we did not have such an uphill battle with doctors! There is something quite devastating about going to a doctor with the hope, that here at last is someone that you don't have to put a "brave face" on for and will understand, and then to be met with "there is no evidence to link platelet levels with fatigue", or "there is nothing to say that your headaches are caused by ET", or "most people with ET are asymtomatic". I have also been on the receiving end of such comments. I wonder where on earth these people get their medical information from, because there is such a lot of good evidence of the fatigue, headaches, circulation problems and so on! The other thing that I find difficult in such situations is the feeling that one is in the wrong and making the symptoms up! Earlier this year I was feeling rather desperate because I was getting those sort of messages, but I was able to change to another haematologist who I feel much more able to talk to. I also feel "believed", which is a wonderful thing. I also was able to have a long and productive "heart to heart" with my local GP and she, whilst admitting not to know much about the condition, was most supportive and helpful (and was instrumental in facilitating my change of haematologist).

Sorry this has got rather long for a comment!

Anyway, Kind Thoughts to you. I hope you find the support and respect from the medical profession that you need and should have.

Peter

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Thanks for all the replies. I'm feeling upbeat I'm myself. My Pilates and yoga class helps.

Had another bad migraine attack but just didn't beat myself up. Spent the day in bed and feel fine today

Remaining positive in myself. I don't have family so only have an elderly mum who looks after me . Thank God she is strong .

Tomorrow is another day.

Thanks for all your support.

Heather

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My Haematology Senior Registrar told me that joint pain, stiffness, and swelling were not a symptom of ET. She says she will investigate my blood results and records for anything auto-immune.

I saw a Rheumatologist some years ago, he said the joint pain and stiffness was not arthritis. It was he who picked up on the raised platelet count and sent bloods for genetics.

So everyone says it is not their department. The best they can offer is to take pain killers. In the meantime my hands look old and ugly and my fingers lock up overnight.

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