Second Opinion

[Anonymous022719-]

Hey guys,

I went to my 1st doctor which is younger hema these are my symptoms

My 1st ever platelets is 595,000 and high WBC

Dizziness

Tinnitus

Itching palms and skin

Headache

Bone pain almost all over the body

Fatigued

Chest pain.

Depressed

Then he prescribed me Hydroxyruea, Aspirin and Allopurinol.

I am Jak2 Negative and no longer proceed with other mutation tests.

Then days passed, as I take my medicines. I reallystill don't feel well. Bone pain, chest pain, stomach ache (new symptoms) Insomnia, and Restless Leg Syndrome. ( Which are also new symptoms)

THEN

I went to the only one MPN doctor recognized here in the Philippines. I consulted her since my bone pain worsen eventhough I am taking my meds. I said that i really need second opinion. The doctor said that she is least considering me having MPN ET because i don't even reach 600,000 platelets. My highest is 595,000 and my newest platelet count while taking my meds was 495,000.

Instead, she suspects that I have lupus and my blood tests are only secondary because of inflammed organs. She wants me to do several blood works like C3, ESR and ANA

I really don't know what to feel right now.

Anyway,

Keep safe always

[socrates_8]

Hey Anonymous022719...

When we spoke last, I had mistakenly been under the impression that you had previously said that you were JAK2+, and not Negative.

Nevertheless, there are at least Two (2) other MPN "Driver" mutations, aside from JAK2, which are called respectively:

* MPL &

* CALR

Then there is another even term called "Triple Negative" which is when a person has many of the MPN symptom burden but none of the known 'Driver' mutations.

All MPN "driver" mutations activate what is called the 'JAK-STAT' pathway, which is ultimately how the mutation proliferates by continuously cloning faulty cells many times over.

There are other Tests that can be performed to reveal whether or not you have one of the other "Driver" mutations, and there is also what is called a Bone Marrow Biopsy (BMB).

Many of us here have successfully undergone a BMB procedure, to help understand if there is any scarring of the bone marrow, which is generally referred to as 'Fibrosis'.

Anyways, now you have sought a 2nd opinion, and that's an excellent move, as you've also found an MPN Specialist there in the Philippines. Hopefully, she will soon be able to help you identify whether or not you have an MPN at all...

Best wishes and please keep us informed as to how everything works out for you...

Stay safe & well...

Steve

[Cja1956 in reply to socrates_8]

Hi, Steve, so glad to see you on the site. I was wondering how you were doing. Hope all is well.

Cindy

[socrates_8 in reply to Cja1956]

Hi Cindy...

Hoping you guys are keeping safe & well too...

Yes, I have been a tad quieter of late.

Here in Sydney, we have been in Lockdown for quite some time now... These are strange days indeed. Hopefully, things are gaining pace here & some changes to the status quo might soon be the order for the new day that awaits us nigh...

Best wishes, stay safe & well...

Steve

[hunter5582]

It is definitely time to follow up on the testing the MPN Specialist recommended. This may indeed be a reactive thrombocytosis. It is possible that you do not have a MPN. As Socrates suggests, there are additional mutations to check for to verify your MPN status. As he suggested, a BMB may be a good idea at this point. Follow up on testing for Lupus is also very important. Getting an accurate assessment will be essential in figuring out the correct treatment plan.

Please do let us know how things unfold. We can all benefit by what you learn. You will be in thoughts and prayers,

[Anonymous022719-]

Hey guys just an update.

So I received my blood chem result and it turns out that all are within normal range the C3, ANA and ESR. So there's a 80 to 90 percent chance that I don't have Lupus. Next week is my follow up check up.

But still I am experiencing severe pain up to skull. And very dizzy