Whats wrong with me???

[Sarahjane100]

I was told today that my BMB results showed no sign of any MPN whatsoever! I was told to keep taking the aspirin and come back in three months! I'm so frustrated! He said they were going to discuss my case in their next meeting. I don't know what to do now. The heamotoligist said it was a mystery why my platelets were so high. Now I feel an imposter on this site! I'm back to square one now, knowing nothing. Feel so down and uncertain. Just want some answers.

[Rachelthepotter]

Hi Sarahjane. You could ask to be have the result of the meeting that will be discussing your case as soon as it happens: being kept in suspense for 3 months isn’t good for anyone. Who to ask? Your CNS, if you have one, or the haematologist’s secretary, or if all else fails, the PALS team at the hospital.

Is the asprin helping your platelets to normalise?

[Sarahjane100 in reply to Rachelthepotter]

Thank you for your kind and prompt reply. I think the aspirin may have helped. But I feel that the heamotoligist I saw was so dismissive and unhelpful. I also read on Google, that consistently high platelets are an indicator of a possible cancer diagnosis, if no other reasons are found for the platelets being high. There must be a reason for them being consistently high. I need to know!!! I will phone the heamotoligist department tomorrow and ask for another appointment with someone more helpful and understanding. Thank you again. I appreciate your kind and helpful reply. xxx

[Aime]

Hi Sarahjane, please don’t take this lying down, you are not a fraud and you need answers, sooner than three months time. Please stop googling as this can lead to so much anxiety as there is a lot of false information out there.

Insist on an appointment to get your answers. Kindest regards Aime.xx😺😺 Remember the folks on this forum are hear for you.

[Aime in reply to Aime]

Sorry “here” for you.xx😹😹

[stillkicking]

Hi Sarahjane,

I just wanted to add, please don't "feel like an imposter on this site"! You are going through a most horrible time of uncertainty that many of us here have been through (or are also going through), so you very much still part of the family here!

When I was having tests to determine what was causing my high platelets, I came back negative to JAK2 and, after a wait of a few more weeks, negative to CALR also. I then went for a bone marrow biopsy, and I remember the haematologist telling me that if this came back negative then I would have to go back to my GP for further investigations as to the cause. I felt very low, and a bit terrified when she told me that, as it felt like it was going to become a hunt for a needle in a haystack, and I was about to be sent right back to the beginning of the search again. For me I was lucky to have the ET that I have confirmed by the BMB, but I really feel for you, because I do remember the awful panic that I had at the thought of the test being inconclusive.

What Rachel says makes a lot of sense, and it would definitely be a good idea to see if you can learn the result of the meeting, and know what was planned for you.

Kind Thoughts to you and hugs,

Do keep in touch.

Peter

[Sarahjane100]

Thank you so much to all of you lovely people who have responded to me. I appreciate each and every single one. I am going to contact the heamotology unit tomorrow, and ask to see someone more senior for some more answers. If it's not an MPN, then I need to know what it IS. Maybe an MRI scan would detect something? I don't know. I really don't know. X

[ksos]

Hang in there, Sarahjane -- and keep pushing for what you need from your healthcare provider. Three months to find out is just too long, and if you make a little noise, they will be quicker to respond. Something is going on and you deserve to know what it is. And keep coming back here and let us know how you're doing.

Kim

[katiewalsh]

Hi. I believe that your bone marrow can be free of scaring & still have an MPN. DID THEY DO BLOOD TESTS TO TEST (oops didn’t mean to be all caps) for genetic changes consistent with an MPN? Not always present but many of us test positive for JAK2 gene mutation & others. Good luck!! Katie

[Sarahjane100 in reply to katiewalsh]

Hello Katie. I've tested triple negative for all the usual gene tests, including jak 2. The heamotoligist was absolutely adamant that I do not have an MPN! He told me yesterday that I was a bit of a mystery! Back to square one for me. This all began last December, so after the BMB in July, there doesn't seem much left to test. So frustrating. X

[Ebot]

How completely frustrating and anxiety inducing. Who’d have thought we’d be writing here that it’s actually a relief to be diagnosed with an MPN!

On the upside, there’s nothing that many medics like more than the challenge of a mystery. Fingers crossed, being a bit of a mystery and the focus of a team discussion will be to your advantage. In the meantime please keep away from Dr Google. You’ll drive yourself to distraction. Could you go and have a chat with your GP? Or as suggested a CNS in the haematology department.

The months ahead are as much about keeping your head in a good place as getting answers. I think we’re so use to expecting and getting instant information, answers and resolutions that we are thrown of kilter when that doesn’t happen. We’ve forgotten just how much of life is unpredictable and still mysterious and that answers and resolutions are often not instant. I wish you strength and patience. I hope you do get answers soon. Please keep us posted.

[PhilReade]

Hi I seen Professor Mehta at London Royal free hospital he stated bone marrow biopsy isnt always accurate in diagnosis in MPN Jak2 blood test is more accurate according to him have you had that test ?

Regards

Phil

[Sarahjane100 in reply to PhilReade]

Hello PHill. Yes, I am triple negative for jak 2 and all other gene blood tests . I really don't know where to go from here. Regards, Sally. X

[Wyebird]

Hi Sarahjane,

Have you been tested for mutated genes? My basic understanding is that a BMB will measure your cells and will then be used as a bench mark for when you get retested.

A blood test for a mutation can take a few weeks to come back. I had to have an endoscopy ( down and up) to see if my ET was secondary. If you haven’t been tested for MPNs and they refuse maybe a second opinion from an mpn specialist.

[Elcee253]

Hi Sarahjane

No real advice to offer I'm afraid but just to say I'm in a similar position and sympathise with the confusion and uncertainty. As I also am triple negative my haematologist keeps changing the diagnosis most appts! I hope you are able to get some clarity soon

Hang in there xx

[isimmy]

Hi Sarahjane.

I fully understand your anxiety and frustration and feel that to leave you worrying with no answers for three months is unacceptable. I would fully echo what Rachel and Aime have said.

I certainly don't think that you should consider yourself an imposter. Hopefully after your case has been discussed you can get some answers a lot sooner than three months and start to move forwards.

Keep posting and wishing you all the best.

[Rastavapa]

Try not to fret, we have all been there, I had to get a second opinion years ago as they was not sure what Mpn I had the first doctor just said I had blood cancer that was it, after my bmb they came back with et, you must push all the way and ask as many questions and demand as many answers, it's your body you need to know, have you asked for a second opinion with a different Mpn specialist, maybe get referred to guys.

Hope you find an answer soon

Take it easy

Nick

[ChelseaF]

I am so sorry you find yourself in this frustrating position. I am in the same boat. Negative for a host of mutations and biopsy inconclusive. They are still treating me as though I have ET (platelets high at least 12 years) and we continue to investigate other possibilities. My hematologist believes one day I will have a mutation show it’s face and I was skeptical but in another MPN group recently, I read about exactly that happening to someone else.

I did go to numerous specialists to rule out some cancers and I would recommend consulting with your GP about what makes sense in your case to screen for. I am soon to be tested for Celiac to rule that out as a possibility. Other than that keep your chin up and monitor for any changes.

[Sarahjane100 in reply to ChelseaF]

Thank you Chelsea. I so appreciate your kind words. I honestly don't know what to make of things. I rang my GP at my local surgery this morning, to voice my concern over things. He was very informed and interested in MPN'S, and told me he recently had a meeting to discuss reasons why platelet levels may be high consistently for a long time in some people, but with an MPN ruled out. He agreed with me that I should be sent for a chest and pelvic scan, to rule out cancer as a reason for high platelets and high white cell count. He also suggested I needed a blood test to rule out ovarian cancer, called a CA125 test. So he is now arranging all that for me. You have to be your own advocate in this world! Sending you love and hugs, Sally. XXX

[ChelseaF in reply to Sarahjane100]

I’m glad your GP is on it! That’s half the battle. I hope you are able to find answers soon. Good luck!

[Helpatlast]

Sorry you have had these problems, it's both frustrating and upsetting. It can often take some time to distinguish a MPN and really needs a consultant specialised in them to assist. I was diagnosed 13 years ago and had all the other scans (pelvic chest admon etc ) prior to BMB and the MPN route which was standard in my hospital, so you should ask for that. But also many of us are triple neg and there continues to be new more refined testing that can be done on the blood to define it more, and as others have said much research is ongoing for other mutations yet to be found. Do you match up with a lot of the MPN symptoms - fatigue, itching, sweats, visual problems etc etc - discussing symptoms such as these if present can help an assessment too. I am triple neg still have very fluctuating platelets levels although I have been on HU since diagnosis and am a bit of a "mystery" in my clinic too so continue to have various tests done. So you are not alone in not always following the "normal" pattern and I thunk many here will agree that MPNs tend to vary in many patients so again you are not alone on that. Do see if you can referral to a local hospital that specialises in MPN to get some more specific assistance- keep us updated.

[fernie]

I was negative up until a short while ago, platelets high since 2011, and recently got sent for all the cancer scans, chest Xray, etc. etc, and then the next week the JAK2 showed up in a blood test. So you just never know.