Getting an MPN specialist as advised by Hunter and experience of GasLighting

[Jelbea]

Firstly, thank you to Hunter for all the support he has given me and always telling me I need an MPN specialist. I now report I have done this and am very pleased. I live in Northern Ireland and could not find an MPN specialist here. I therefore decided to email Professor Claire Harrison at Guys Hospital in London. She immediately emailed me back and gave me the name of Professor Mary Frances McMullin of Belfast City Hospital. I emailed her and she readily agreed to see me.

I had been having problems with severe burning feet and ankles and I had told different doctors on four occasions at my haematology clinic. Every time I was told this had nothing to do with my ET/PV or my treatment on hydroxycarbamide. In my own mind I knew it was to do with my ailment. In fact on my last visit to the haem. clinic I was told that they only dealt with the levels of blood cells and nothing else!!!!

Prof. McMullin was great. She confirmed that it was microvascular in nature as Hunter had told me. I had also been suffering from migraine auras with and without headache but with speech disturbance for twenty years (also microvascular) and had been prescribed low dose aspirin at a London Clinic at that time. This had been great, reducing the auras from several times daily to two or three times a year. The haem. clinic kept telling me to stop the aspirin and would not listen that whenever I did stop I developed a bad migraine a week later (aspirin lasts this long in your system). I am on the blood thinner rivaroxaban and of course taking aspirin as well is an added risk which I fully understand. However, my risk of the severe migraine developing into a stroke has to be considered and Prof. McMullin felt I required the aspirin which she suggested I try three days a week and I know I have to take this risk.

To all of you who have not got an MPN specialist I would definitely advise you to do so. As you can see my symptoms have been ignored on many occasions. I do wish that doctors would "really listen" to their patients. The situation for us elderly patients (I am 80) is even more difficult as younger people seem to think our brains atrophy as we age and we get talked down to or patronised when in actual fact we are often more knowledgeable than those we are talking to.

Sorry for the long post but I hope it helps newcomers to realise the value of MPN specialists.

Thank you again to Hunter and indeed all you members who give so freely of your time and expertise to help us all. It is comforting to have access to all this knowledge.

[mhos61]

Absolutely delighted for you.

[Mostew]

Well done. Do hope you do OK on asprin 3 days a week .Certainly no need to apologise for your post. Its good to hear your news

[hunter5582]

That is OUTSTANDING!!! I am so glad you found a MPN Specialist and that this doc is so great. Please be sure to add the doc to the MPN Forum list of MPN Specialists. Others in Northern Ireland need to know. originalText

I am glad yo hear you got confirmation of the microvascular issues. Of course these are MPN-related. This is common knowledge. Aspirin can definitely help with these symptoms. That is part of its purpose in treatment.

Aspirin is an antiplatelet medication. Rivaroxaban is an anticoagulant (a NOAC). These two meds have some similar effects but work differently. They can be taken together even though there is an increased bleeding risk. Fortunately, the newer class of anticoagulant (NOACs like rivaroxaban) come with reduced bleeding risk. Given what you describe, combining aspirin with rivaroxaban makes total sense and is definitely worth the risk.

Your plan to try aspirin every other day could very well work just fine given how aspirin works. As an alternative, something I did for a time was to take half of a chewable low-dose aspirin every day. I was off aspirin at the time and was concerned as I have a history of excessive hemorrhage when on aspirin. I had developed the same burning pain in the feet that you reported. It stopped the same day that I started on 40.5mg aspirin/day and never returned. Do be sure to check this out with your wonderful new doc if you are interested in that approach.

As one of those "older" patients I can say that our brains do not atrophy just because we age. I would assist a younger doctor who was confused about this and help said provider adjust his/her approach.

I am so very glad to hear how much better your care team is now. All the best moving forward.

[Jelbea in reply to hunter5582]

Thank you Hunter for your further advice. I shall keep in mind the half aspirin chewed daily. I know I have to take the risk of taking both medications. I tried to talk to the haematologist before regarding the fact that aspirin thins the platelets. I had at a time sourced on the internet a very good description of what happens when one has a bleed. It explained the cascade of events which happens to cause the blood to clot. The platelet situation came at the end of the cascade. This was why aspirin helped to keep away my migraine auras which were caused by sticky platelets. My previous GP laughed scornfully at me when I talked of sticky platelets and clumping. He said he had never heard of anything like that. Professor McMullin used exactly those terms to me on Monday. Throughout my life (and I can see you are the same) if I do not understand something or hear something new I have always found out all I can about it. It is a pity those who are supposed to help us do not try to become well informed.I am not sure how to get Prof. McMullin's name on the register which is why I have mentioned her in my post so that others may use the information for themselves.

With thanks again

Jelbea

[hunter5582 in reply to Jelbea]

Your experience is a good example of why it is so important to educate yourself and be your own best advocate. Finding a provider with both the right attitude and MPN knowledge is vital in quality MPN care. Glad that you have found this. Hopefully others will as well.

Here is the link to add Dr. McMullin.

mpnforum.com/good-doc/

[Jelbea in reply to hunter5582]

Thank you for the link. I have added the details.

[Otterfield in reply to Jelbea]

It only in the last year or so that I have heard of platelets clumping. However, my CNS told me that it happens after blood is taken from the vein and it can give a falsely low reading in the lab.

[Jelbea in reply to Otterfield]

Hi Otterfield - Thanks for your reply. I first heard the terms "sticky platelets" and "clumping" when I attended the London Migraine Clinic 20 years ago and yet my GP had not heard of them last year and actually mocked me for saying it. When I was with my MPN specialist on Monday she used both the terms in conversation with me. My platelets were clumping in a blood vessel in my head and causing the typical migraine auras of which I was having perhaps five a day. The daily low dose aspirin worked so well for 20 years but obviously the ET/PV has started way back. I am wishing you all the best for your upcoming treatment and hope all goes well with you

[Otterfield in reply to Jelbea]

Interesting. Every day's a school day!Thanks for your good wishes.

[Barbiebreath]

So happy to hear that you have found a specialist.

I, too, owe much to this support group. I saw mine yesterday and couldn’t help but be thankful.

If I had continued on with my hematologist in town I’m afraid I might still be waiting to be taken care of. I have faith that your new MPN specialist will give you a higher level of care as well.

Good luck to you and let us know how you’re doing!

[Jelbea in reply to Barbiebreath]

Thank you so much for your reply and I am glad you have someone you can trust as well. Best Wishes

[BmoreAnne]

Hello and thanks for making this post! Hunter is very knowledgeable and I just recently joined this forum last week. Being 32 & not knowing much about MPN as it's relatively new to me. I'm also on the Xarelto for 6 weeks now & was just told by Hematologist to start taking low dose aspirin as well at least until they get my jak2 & calr results back. I didn't start the aspirin yet but seen you said there are risks? May I ask what those risks are?

[Jelbea in reply to BmoreAnne]

Hello BmoreAnne - I assume you had a clot as you are taking Xarelto. Both aspirin and Xarelto are blood thinners but work differently. Aspirin stops platelets sticking together and clumping. if you take both there is an increased risk of a bleed. Until you get your results back your haematologist obviously thinks it is worth this added slight risk and then your treatment will be adjusted. I take my aspirin at the opposite end of the day to Xarelto and I take it during or after a meal with a good drink of water.Do let us know how you are getting on. It is scary at first and very little was explained to me. This forum is great 👍 best wishes From

Jelbea

[BmoreAnne in reply to Jelbea]

Thank you for your reply, I only took the aspirin yesterday than received a call this morning stating my JaK2 and CALR tests were negative so was told to discontinue the aspirin and just continue the Xarelto until my next appt in October. But yes I have a clot in my left leg and was diagnosed with secondary polycythemia, erythrocytosis, and macrocytic anemia. She said I won't need any further treatment at this time so I think that was great news!

[Jelbea in reply to BmoreAnne]

I am so glad to hear your good news. Best Wishes for the future

[MaggieSylvie]

I'm another 77-year old who sometimes gets talked down to. They just don't get it, do they? I must admit that I haven't yet taken the advice of Hunter to get an MPN specialist. I had a blood test on Monday and my platelets are suddenly down into the normal range! I spoke with my MacMillan nurse this morning and we celebrated the fact that I MIGHT not have ET (I am triple negative). In that case, I could be treated for my MDS. I'm also thinking that I could at least cut down on the aspirin, as I have been taking 75 mg a day and have just read an article that says there is no proof that high platelets cause clots, except in certain circumstances. That's thanks to Hunter, that great font of knowledge, who, I believe, posted the article. I think my haematologist has enough knowledge for me and there is a team of them. My main problem now, and it's urgent, is my pituitary problem. If only they would test for T3!

[Jelbea in reply to MaggieSylvie]

Hi MaggieSylvie - Thank you so much for your reply. Unfortunately I am one of the ones whose platelets did cause clots - four in all. I do hope you get the investigation you need for your present problem and I wish you well.

[MaggieSylvie in reply to Jelbea]

Thank you. I'm sorry you were one of the rare ones to get a clot.

[Cja1956]

I agree. Hunter has been a wealth of knowledge on this site and helped steer me to seek out an mpn specialist 3 years ago and I’ve never looked back. I’m so happy you found someone you can trust to listen your issues. All the best,

Cindy

[Jelbea in reply to Cja1956]

Thanks Cindy. I am so relieved to have the specialist now and that you also have someone you can trust. It is scary if you feel you are not being listened to and getting the wrong answers. All the best to you

[ja66ck]

Same here. Hunter's advice about seeking a MPN specialist became a blessing once I acted on it. Unfortunately for me, the MPN specialist I was seeing, Jamile M Shammo, MD, is no longer working in the Chicago, IL. area.

[Jelbea in reply to ja66ck]

I am sorry to hear your MPN specialist has left the area and hope you get fixed up with someone else very soon. Thank you for your reply and all good wishes

[azaelea]

So pleased to hear of the great outcome of your decision to email Prof Harrison who put you in touch with the MPN Specialist in Ireland. Glad you’re now on the right track and best wishes for good health in future.

[Jelbea in reply to azaelea]

Thank you azaelea for your kind response. I feel happier in being able to speak to an MPN specialist as opposed to a haematologist who, I am told, really just deals with figures from our blood studies. All good wishes to you