i had my second appointment with haematologist last thursday, after being diagnosed E.T 8 weeks ago, i was told to take aspirin once a day and hopefully it would help my symptoms, which have been, dizziness, fatigue, a crushing feeling under my chest, and constant ringing in my ears, so it was a different Doctor this time, she asks me how have i been... i tell her still the same things happening then she says to me these are NOT symptoms from E.T and i should speak to my G.P, during the 8 weeks i have phoned my G.P twice, about dizziness and ringing in my ears, he told me probably vertigo and tinnitus but no medication, i have had the ringing in y ears around 4 months now, other symptoms for about 2 years!! According to this haematologist symptoms from E.T are tingling in hands and feet and a sensation of fullness?? i realise there is probably no miracle tablet but now i am feeling like i am a hypochondriac!! thats me not to go back for 6 months, so is this it now? feeling like this, it's been going on a long time and i kept thinking it was menopause and i would get better soon but now am feeling very pessimistic, i have hardly any energy and my work takes up most of it so there is not much left for anything else
symptoms: i had my second appointment with... - MPN Voice
symptoms
You’re hematologist obviously doesn’t have much experience with MPN’s. Those are classic symptoms of ET. You definitely need to find a specialist. Run as fast as you can away from this doctor. She should be ashamed of herself for making you feel like a hypochondriac and her lack of knowledge.
I wish you well on your Mpn journey.
thankyou, i am going to have to look into an MPN specialist, i am just feeling very let down by the system at the moment. i know they are struggling but they just fob you off and make you feel like you are just moaning
You are most certainly not being a hypochondriac. You are experiencing common secondary/constitutional symptoms of a MPN. Everything you have listed is common to people with MPNs. Cja1956 is 100% correct. You need to consult with a MPN Specialist. Unfortunately, many hematologists so not have the KSAs to provide MPN care at the level we need. Here is a list of patient recommended docs who treat MPNs. mpnforum.com/list-hem./
Here are couple of resources you may find useful.
voicesofmpn.com/essential-t...
mpnresearchfoundation.org/e...
It is a core truth that assertive patients receive higher quality care. Passive patients do not. Educating yourself about ET will allow you to more effectively advocate for yourself. It is your right and your responsibility to select the MPN provider of your choice and work collaboratively with this provider regarding your care.
All the best to you.
thank you so much, i will definitely have to find my nearest one, that's it now, back in 6 months time, in the meantime i have these symptoms all the time, and G.P is pointless, thankyou
Your symptoms are real. I would be in a mental asylum ( if there was any 😞 ) because of the way I was treated in the beginning ( not a lot better now! ) everyone here saved my mental bacon 😁Please do not get your hopes up about a specialist either, mine was hardly any better 😭
rarediseases.org/rare-disea...
Your symptoms are described in the above resource. Maybe you could ask your haematologist to explain?
thank you so much, i will print this out for any future appointments, although that will be it for 6 months for me now
I would not wait another 6 months. Push to go see MPN specialist for proper care.
I am so sorry you had this experience. My dizziness is sometimes caused from not drinking enough water. I need 3 liters of water daily to feel ok, otherwise I feel nauseated, dizzy, weak. Hope this helps you.
thankyou, i will certainly try drink more, it can only help
Oh my goodness I actually feel like I am reading part of my own story here. I did exactly the same and told the Consultant on the phone last time that I had dizziness, sometimes pains in the chest, ringing in my ears and what feels like vertigo. I still get many of these daily but have only just started my treatment so am hoping that some of them at least may ease. I also was told that these are not necessarily symptoms of ET and that I maybe need to check with my GP. When there is a 5 week wait for just a phone consultation it seems pointless. Sounds exactly a mirror image of my own experience. I did also emphasise to the consultant that many of these symptoms for me were also heightened about three weeks after my second Astra jab. I do not know whether there is any relation and she noted the fact but didnt really pass any comment on it. I have been on one aspirin a day and it does not make any difference to my symtoms at all but also have to continue taking this with the hydroxycarbomide. Hope this makes you feel more reassured.
you wait two months on an appointment to be told everything you are saying is nothing to do with your condition we will phone you in 6 months, what is the point, i should have just kept thinking it was the menopause at least then i had the hope of things getting better, now it just seems like this is the new normal! oh well what can we do, just need to learn to live with it like everything else it seems, you just think once you get a diagnosis of this you will get something that will make you feel a bit better, sorry now i am sounding like one of these moaning hypochondriacs lol, they actually are telling me the 'only' symptoms are the tingling and feeling of fullness! unreal, i am going to look into the MPN specialists, the thought of being like this all the time is not good, i have been having all these things for a few year now, (apart from the ringing in ears just the last 4 months with that one) so i should be used to it all now, i just had hoped to get a little bit better and a bit more energy, i hope that you will start to feel better soon with the hydroxycarbamide, when were you diagnosed? have you had these symptoms for a while as well? thankyou
I sympathise with you more than you can know as I have experienced exactly the same scenario you are now experiencing. In the end I had to take the bit between the teeth. I wrote a letter to my GP surgery explaining all that was going on and that I was facing a brick wall trying to get an appointment to get treatment started as I was beginning to find it very difficult coping with all the symptoms you have described. I also copied in that letter to the CEO of the hospital (whose email I found by googling it) I was beginning to despair with feeling no one was listening and continually being told there are no appointments until January, etc etc. Well that was on the Friday afternoon and by 10.30 Monday morning my phone rang and it was the Secretary at the hospital telling me I would have a call from the Specialist Nurse to get things sorted out. I had a call from her a couple of hours later and an appointment the next day. (This was not as it transpired a result of sending the letter to my GP, whom I found out actually left 5 weeks ago!!) I too was being palmed off with telephone appointments months apart (another one due this Wednesday) which had I not done what I did I would still I am sure not have been seen. I do not know at the end of the day who actually picked up on it and got things moving but I am truly thankful now they did and once you are in the system hopefully it will be much easier with dedicated phone numbers etc. I can only say do not be fobbed off, take the bull by the horns and if needs be try the same tactics. I have /had all the symptoms you have mentioned as my platelets hover similar to yours. Keep pushing to get what you need. Yes I have had the symptoms most of this year now, the headaches started in about February, I was diagnosed about January and just started treatment from Friday. The ringing in the ears, vertigo etc have like you been in about the last two or three months, but the tingling is there most of the time. I hope I can inspire you to keep trying and pray that you get a positive result very soon. I also telephoned the Consultant's secretary a few times and said my symptoms were worsening and that was the start.
I know this was from 10 months ago but I had all your symptoms plus very high blood pressure and my dizziness, vertigo, ringing in ears was cured by doing the Epley maneuver with a PT. I had Benign Paroxysmal Vertigo which as I understand it is that the crystals in your ear canal get stuck and have to be released by the Epley maneuver. I've had it twice now and the last time I was able to release them at home on my own.Hope this helps.
I had a similar experience. After my sky high platelets (1400+) were ignored for 3years, I was finally referred to a haematologist. I told her I had burning toes/fingers, that even cool shower water felt scorching. I felt dizzy, exhausted. My heart pounding, and other symptoms. She told me it was NOTHING to do with ET. Yet discussions here have told me the contrary. I already have one serious genetic condition, so negating symptoms is paramount. The way she was so dismissive was a disgrace. Good luck to you
That is truly dreadful. It appears many of the haematologists are not that familiar with ET as it is fairly rare condition it seems. However there are a lot of us on here suffering with it and hope you have now been able to move your situation on further and get the results you need and deserve.
Hi. Sorry to hear you’re suffering. I’d phone your haematologist’s secretary & explain your concerns & ask for an urgent review. I was given aspirin which I took for a week before getting a phonecall from the hospital saying stop it immediately as it wasn’t suitable, I’m assuming because I’m CAL-R or my clotting factor was too low. I’m not completely sure how it works but it’s worth asking rather than waiting 6 months which does seem far too long…..x
Please try to go see a MPN Specialist
If this heamo isn’t an MPN specialist then I think maybe you need to see one. You don’t say what your platelets are but I suffered from tiredness when mine were over 500 . I actually bought an iron tonic from the chemist!! I don’t have tinnitus but I think it’s a common symptom. Go armed with an MPN voice booklet on ET and question your heamo’s responses. Meanwhile set the wheels in motion and ask for MPN specialist. Maz will have a list.
Good luck.
I agree with irishiker- go to your GP armed with your knowledge. Ask for a Specialist MPN specialist- Maz has a list/ get the first appointment no matter where in the country it is. You can always get transferred closer to home should you wish, once you’ve been seen you are in the system.Good luck
Definitely ask to be referred to a haematologist. Aspirin helped ‘clear’ my chest
Hi doglover49. My first hematologist also told me fatigue and the tingling sensations in my legs were not related to ET. After reading comments on this forum on the importance of seeing a specialist for our conditions, I found an MPN specialist in my area who told me that most of my symptoms were likely due to ET. Now I work on managing these symptoms and being kinder to myself on days when my body feels ‘off’.
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