Just found this article provided some sound advice when it comes to any one considering gaining a 2nd, or3rd opinion etc...
Personally, I believe that it is not only beneficial but imperative that MPN Patient's find the right doctor to help them deal with what is a rather complex illness, and therefore... making sure that they eventually find the help that they need might simply be effected by gaining a 2nd or 3rd opinion, in my view...
The following article mentions a number of reasons why this might also prove to be very useful, in fact one study showed:
An example is a 2018 study published in the Annals of Surgical Oncology that found that a second review by a multidisciplinary tumor board at a National Cancer Institute-designated cancer center changed the diagnosis for 43% of the 70 patients in the study.
In my personal MPN journey (MF/MDS-U, SCT yes/No?) I found a second opinion was helpful in confirming the first opinion (even though I knew deep down that the 1st opinion was correct) - what complicated things a little was a 3rd opinion that differed to the other 2!
So what was/is the outcome? Was the 3rd opinion true in your case, or don't you know at this juncture...?
I found that it is also extremely important to have a sound communicative understanding with my medical team too...
My first two (2) GPs were not the right people for me... The 3rd, & one I have to this day... Readily acknowledged his lack of MPNs, and we have been sharing this MPN journey together ever since... but at times one does need to be a tad assertive too, in my view...
i) the MPN/blood illness specialist told me 'this is heading for an SCT - stabilise with Pegasys for the moment' get a second opinion if you wish.
ii) Second opinion planned 12wks later with one of the big French specialists in Paris.
iii) Third opinion pops up through a 'holiday neighbour' who got me a Rendez-vous with his blood disorder specialist. This opinion occured before the 2nd that was planned. This specialist said 'no SCT - keep using Pegasys. SCT outcomes are unpredictable.... '
Last opinion (at Paris, which was the second I had planned but chronologically occurred last) 'no doubt - SCT, is the only viable solution'.
Over here in France the MPN/MDS medical community know each other very well. When I rang to fix the Rendez-vous at Paris I was told 'in 9 months' - when I replied 'Dr Xx here at Angers suggested I seek a second opinion from Prof. JJK' the delay was cut down to 12wks of which 4wks were due to summer holidays !!
When I arrived for my Rendez-vous I was told 'we already know all about your case, extremely rare, can we do some additional blood tests?'
So the outcome - I had a SCT, things weren't easy, GvHD and all that, but almost 5yrs later I'm doing fine. I'll never know if Pegasys would have worked or not.
I should point out that this was 5yrs ago and perhaps things would be different today.
I pushed my husband to go for a second opinion about six months after diagnosis as I wasn't happy with his treatment (or lack of) & could see myself that it wasn't just his platelets that were increasing but all his counts. The second opinion altered his diagnosis within 5 minutes of looking at his results. His case is more complex than sitting in one MPN or the other but he began venesections & was seen more frequently which stabilised his bloods a bit. I'd like him to have a third opinion on the options of meds as he suffers so much with symptoms, which was why he went to the GP for the first time in 20 years in the first place. He's one that doesn't want to make a fuss or complain though so he's not going for it yet.
I'd keep working on him... gently but firmly all the same...
You did the right thing to urge him to have a 2nd, and who knows... The 3rd might be just the one you both need...?
My GP was the 3rd, in consecutive attempts as well... Although he readily admits that he knows scarce little about MPNs, his honesty and disposition were the correct match for me, and we have been on this journey together now for c. 3.5 years... Learning about all things MPN together...
Very best wishes Chaz... & good luck with hubby...
Thanks, I'm working on it. He generally accepts that I'm probably right on a third opinion but he doesn't want to be a bother so we'll soon get there as I think it will help. Thanks for your response. Glad your GP is learning with you, its really helpful if they admit a lack of knowledge & work towards gaining some. Have a good weekend.
I'm a great believer in taking responsibility for our own health and wellbeing and never just accepting a diagnosis. Back in 2012 I was diagnosed with MS - but I knew that I didn't have it, so saw another GP, who referred me to another Consultant. That Consultant agreed, said that he believed that my MRI showed a vascular event, not MS and sent me on my way with no follow up.
So I persisted! I saw another GP and basically pestered her. I was feeling ill all of the time, so wasn't really pestering her. I knew there was something wrong. I was then referred to a stroke doctor, who confirmed that I had a Stroke in 2012 and follow up blood tests confirmed I had PV Jak2+
Since then I have had the same GP, Stroke Doctor and Heam, so it was definitely 3rd time lucky for me. If I had accepted the first two Consultants diagnosis and [lack of] treatment, I may well not have been here today.
Well, yes... you have definitely proved that theory...
It is very easy to be overlooked or, (as well you know....), misdiagnosed...
My first TIA was misdiagnosed as a pinched nerve... Like you, I might not have been here ... In many ways, I was really just lucky that I was accidentally diagnosed a year later...
You are absolutely correct Kari... In that we really MUST be our own best advocates if we are to survive for however long we may ... (?)
Could not agree more strongly with the importance of a second opinion for any rare condition, contemplated surgery. or any time you just need the peace of mind that can come from confirmation that you are on the right track. I have learned the hard way about what happens when you do not get a second opinion and would never move forward on a major medical decision without one.
Here is my perspective as a Canadian dealing with our medical system (I think most of you are British?)
If I had stayed with the first specialist I saw I would never have received eprex, which basically turned into a lifesaver for me. I have 4 different Drs involved in my journey with mf. My GP, who is very experienced and good but had never come across a case of an mpn in his professional career, the internist with an interest in blood disorders he sent me too, who did manage to diagnose the disease (took several months), but had only had 3 cases in decades of practice, and then 2 different hematologists, my local one that has 5-6 cases in her current case load, and one in the nearest major city, who is a highly regarded researcher in the field and whose case load is made up of about 30% by mpn patients. Needless to say, the later two have been the difference makers, and if I had not been aggressive about asking for referrals, I would never have gotten to where I am now, which is not bad for an old guy!!!
Yes, I could not agree more... We really MUST be assertive in seeking answers, and that is why 2nd & 3rd opinions etc... Are of such vital importance...
In our Aussie FORUM 'MATES' we have a really nice guy who was diagnosed early and stayed with his same doctor all this time...
Hi Steven, I hope YOU are well. I think the thing people need to realize is that any Dr that is fulfilling his oath is going to be fine with you seeking information from any professional. The trouble is a lot of people, especially older ones, confuse the respect that they were taught for professionals at a young age and getting another opinion as being disrespectful. Of course, it is not at all.
Many can feel as if they are some how being 'Disloyal'
Forgetting of course that they are the ones who suffer from an MPN illness, and they need to be pro-active in order to move things forward...
Having an MPN condition can be a complex equation, as there are many variables always in the mix that need to be at the very least considered...
In other words, every MPN case should really be managed & treated as a unique event.
For example, far too many simply prescribe HU, when today we really do know so much more about HU, and it is therefore not always the best solution, in my view...
David I am as well as I can be right now, & I hope you & yours enjoy an amazing 2020...
Just loving the numbers this year, '2020'... Some how makes me believe that we might all hear and see much more about ourselves...
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