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Can PV remains undetected for 10 years

Hi

Season’s Greetings for you and your beloved ones everyone.

I am new here .

I am 45 years male and a husband of wonderful supportive wife.

My story:

Eosinophilic Syndrome

- Had it in 2007, very rare (myeloproliferative disorder) (15 in 1 million) with positive gene mutation.

After 6 months medication, re-tested, gene came negative. discontinued medication 1 year later and been free since.

- February 2017, Eosinophils WBC raised a little. Had the mutation test in September 2017 and came negative. Other CBC were within the norms.

Insulinoma

- had it in 2013, also rare (4 in 1 million) , a pancreas tumor (mine was benign) it produce too much insulin and lower blood sugar dangerously.

- Went to Operation and removed tumor, pancreas tail and the spleen as collateral damage.

Suspected PV (by me)

- Had high hemoglobin (16 to 16.5) since 2007, my hema did a test for the high hemoglobin disease (I think he meant PV) it was negative .

-End of 2014 I had some red cheeks, itchy skin in my face and elbows area after warm baths, I thought it skin allergy. no other symptoms than that.

-During last 3 months I developed these symptoms respectively:

-Mild Left hand pinky finger pain then right ankle pain which come and go.

-Mild short breath, not always.

-Feeling of swollen feet but they are not.

I thought it is kidney problem so did some tests and kidney was fine,

and HB :16.9 Hematocrit : 0.51 borderline not flagged by the Lab.

Settled for a week and then came back with new feeling of "irregular heartbeats", slow heart rate and low blood pressure (100/60). Did the same blood test after one month and the results were:

Hemoglobin: 17.5 - Hematocrit: 0,53 L/L - Potassium: 5,5 (range 3,2 - 5,1).

I discovered form my last two years lab results that I had the same high findings of Hemoglobin, Hematocrit, Potassium

A week ago, went to Cardiologist and everything was OK by him, he mentioned blood disorder after seeing the results.

Googled the symptoms which gave me PV. Since then new symptom were added everyday:

Mild Headache, Blurred vision, very mild hot feet, , short breath not always, lower back pain, sudden right elbows joint pain lasted 2 days, finger and ankle joint pain, very mild swollen hands and feet

Planning to see my hema next week.

So, I after this boring long timeline, and if you are still reading, my questions are :

1 - Form the symptoms and timeline, do you think it is PV?

2 - Can PV remains undetected for two years even though I was doing periodical 6-month check-up with my Endocrinology Professor who didn’t catch any problem?

3 – Can the symptoms develop so fast (in a week) or it is my mind and imagination applying the symptoms I had read?

Thank you for any similar experience that you might share.

6 Replies
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Some of your figures are similar to mine when I was diagnosed in September. I too think I may have had it undiagnosed for some time. I had a stroke five years ago and they said it was probably caused by a blood clot but didnt know why. A couple of years after that I got wise and started asking for a print out if I needed a blood test for anything, and now looking back at those old tests I can see that some of my levels were raised then but nothing was said. I'm not one to go to the GP very often but went because I was getting out of breath. With nothing obvious a blood test was done and Bingo. After that my levels rose rapidly until treatment got well established. Now that I have read up on PV, I realise that all the other things that I had been putting up with like itching and blurry vision are all part of it. So I'm of the opinion PV can build up slowly over a long time and then suddenly get worse, but that's only my opinion. Someone else may shed more light on your questions for you.

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Thank you MCW22 for sharing your experience.

I am worried although I had been two times before with the anticipation for something rare and serious.

I just need a quick closing regardless what the outcome is.

Thanks and wish you happy holidays

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Hi JAKBP,

I would suggest that you discuss this with your haematologist next week. Make sure you write down everything that you want answered. Only a medical professional can answer the questions you’ve posed

If you do indeed have PV, it will have to be determined if it is primary or secondary to something else.

Try not to google too much; as you say, you have developed new symptoms daily since doing so. I think we can all understand that! Wait to see what the expert has to say.

Good Luck

Mary x

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Thanks Mary

This is exactly what I have in mind now.

I will see what my hema will say.. dont want to put myself in a place which I am not there yet.

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I would say Google to your hearts content. There's a wealth of useful information out there, and after all isn't that how we all found this brilliant site?

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This is what I have been doning the last 5 days but I am going to stop. I am not diagnosed yet and it is confusing me more. So I an waiting to see my Hema next week.

Thanks for your input

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