MPN Voice

Frustration over Understanding of ET

Recently saw a works Dr who reviews my condition as I'm on restricted duties. Suffer with Sciatica. I work full time . I have mentioned I have Et and was surprised when he said or believed my condition not to have any symptoms that would affect my health. I appreciate symptoms vary but when I disagreed with him he said you just get on with it. The condition doesn't affect your working day.

Am I wrong to think this Dr is wrong.. He couldn't understand why when my platelets had gone from 550 to 1124 in 3 years i was sceptical thry would go down .

Has anyone else suffered this lack of understanding or is it me. I havent had a day off because of this but I get very tired. He made it sound like ET was like having a cold.. it will go. I pointed out it's a condition not just an illness.

I am due to retire in June next year age 54. Just can't believe the lack of understanding on this disorder.. and the effect it has on daily life

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I'm so sorry you have been treated like this. I live in New Zealand and every Doctor/haematologist I have seen has the same opinion as yours. I suffer badly from fatigue, aches/pains to the point I am often unable to perform normal household tasks. I work part time and that's my limit. Here's a link to some information. Maz may be able to be more specific.

mpnvoice.org.uk/about-mpns/...

You're not alone🙂

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Hey Heather... :)

YES! (short answer)

I was originally diagnosed in May 2016 w/ ET - CAL-R w/ platelets at c. 1.7M. A year earlier, I was misdiagnosed when I suffered a TIA (minor brain stroke).

Exactly what you described above is the same thing was what many people who look at us MPNers think, because, it is often the case that we look & sound just fine... Obviously, as we are aware, that does not necessarily mean that we are asymptomatic. However, to be a tad fair to all of them (GPs & society in general), in some senses MPNs are an almost invisible affliction that few understand, let alone know anything about...

I was and am continually astounded that here in the land of Oz, most GPs have never had a patient w/ an MPN. That was the very reason why I used my university library access to edify myself whenever I need to... (accessing medical journals is priceless)

MPN Voice also has plenty of most useful information on their site too...

I was studying full-time prior to diagnosis, and I was actually really struggling, but thought that was simply my domestic situation w/ family & some recent family bereavements etc...

However, I now know I simply can't do stress anymore! Period! (Hence, I am not working & studying only spasmodically part-time at the present)

My MPN (now early MF), was discovered accidentally via a routine medical prior to being posted abroad in SE Asia after 5 years of study... The GPs knew nothing! My Haematologist, to be completely fair, (& in my own estimate) is only marginally better acquainted than the GPs. However, acquainted she is, and that in itself was an epiphany for me...

I keep records of all my bloods, and all other related tests that I undertake, as well as the chemicals I am forced to take to keep functioning, and I put them all in to a Table so I can easily monitor myself what is actually happening to me...

My fatigue & nausea are my constant companions these days. I also still suffer from some fairly extreme bone & joint pains, cold sweats, some skin irritations, headaches, vertigo, and most disturbing for me – some short-term memory lapses... ( & others)...

However, I am mindful that my type of cancer is not an acute form 'Yet' and therefore I am most fortunate...

I recently decided to improve my level of fitness, and invested in a road cycle (& loving it), however, I usually collapse quite soon afterward, and there is some carry over generally into the following day... However, I feel so much the better for it all the same...

When my spleen was enlarged, my diet changed to just the evening meal of 'Low-No Carbs', and I have trimmed up immensely (18kg last count)...

Best to try to stay as positive as possible I believe, and it is so easy to become extremely depressed... For instance; I keep telling myself that I am determined to make of myself a most handsome corpse someday ;)

Heather, to date, MPN Voice has been the best place for me to come & speak w/ others who truly understand me & my MPN condition, as I am certain you shall learn very shortly...

Best wishes Heather

Steve

(Sydney)

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Hi there, I'm with the others, mpn voice is the best place, stay with us. It has saved my sanity! Everything you are experiencing is real. Read some of the past posts, it might make you cry,saying that's me,that's me. But the relief is immense. 🤗

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Ps. I have had to resign from a very part time job, due to ET related ill health.

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Hi Heather. I am afraid that the replies so far are just how I feel. The variance of knowledge among haematology consultants is quite strange. I sometimes feel have they actually studied the same books? When I hear of the experience of some MPN patients who have great care from their medics I am delighted that they have found good advice and understanding. This site is so very important to us all as we know many symptoms which we suffer constantly , are denied by the experts as having anything to do with our condition....so knowing that there are many others feeling exactly as we do is reassuring to say the least.

This lack of understanding by many doctors is reflected in the fact that so many people want to have consultations with Professor Harrison.

Keep reading our wonderful site for information ,help and empathy.

Meanwhile I would suggest if possible you seek out another opinion if you are not happy or confident with your present Heamo.

With best wishes Sandy.

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hi. Copy lots and lots of relevant info, including some comments from this forum, pack them up, take a tea bag, go and see this 'doctor' and tell him to come back to you, as a professional, when he has done his job and found out about an illness he needs to know about as he has to deal with you and you have it. The teabag is to stop him getting dehydrated 😁😝😁 If that doesn't work tell him he's an uneducated idiot.....then run!!!!!! Good luck💋

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Thanks for all your comments. My comments were about my employers Dr.. who I have to see because of my job. Due to sciatica and back pain I cannot perform all areas of my job. I work in an office based role now. What I was surprised about was when I mentioned my blood condition ..it was as though I had a cold and it would clear up next week. No understanding that it can give different symptoms. Yes I take aspirin.. but my platelets have rocketed and I get tired.

Luckily my sciatica is so bad my status as restricted remains. I still work full time . I have 10 months left then retirement. I will be 54 and have so many other things I want to do. Can't wait.

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I think alot of doctors dont know much about ET,because it is a rare condition,just before i found out i had ET,i had a bleed in my bowl,doctors didnt find why,then few weeks later i had TIA's,then mini stroke,i had brain scans dopplers etc,doctor done blood test and seen my platlets were 900,was put on asprin,more tests bone biopsy,spine tap etc took 2 weeks was so scary,found i had ET and jak2,makes me mad that doctors think just get on with it,yes its a life long illness,injections interferon,days you feel like crap but just get on with it,i work in the NHS myself and have check ups in occy health they didnt have a clue about ET till i told them about the condition so i know how you feel x

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You say you are due to retire next year, are you a public sector worker as I was in a similar position in the Fire Brigade.

Gerard

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