Still Undiagnosed !!!

[Vigiindia]

Hi Everyone,

Today i had an appointment with my hem and he still says that we have to wait another 3 to 4 months for definative diagnosis.

As i had gone with 1initial phlobotomy in past 1 and half months, then after my hct and hb and rbc slightly decreases without any phlobotomy and i had never increased in platelates and wbc.

Bone marrow biopsy also un conclusive

(Normocellular with mild megaloblastosis,myloid cell normal,megakarycytes normal)

i had stop my all habits i.e.drinking and smoking

Jack2negative EPO-7(range 4 to 29)

My hem said that it may b secondary polycythemia or Idiopathic Erythrocytosis but still have to wait!!!

Whatever it may b but i just want to diagnosis and out of these waiting results

[Sarahjane100]

Hello. This is sarahjane. I am also undiagnosed after a year of appointments and tests at hospital. Triple negative and bone marrow normal. But platelets high for 6 years. Highest was 590. Now I am signed off from hospital heamotoligist appointments. No answer as to why my platelets high!

[Vigiindia in reply to Sarahjane100]

Hi

I think for ET triple negative possible and there is a evidence but PV is unlikely to negative any mutations if so it will b secondary polycythemia or idiopathic Erythrocytosis

[Sarahjane100 in reply to Vigiindia]

I don't know what to think now. I've been discharged from hospital with no answers. I did make a complaint, as so worried about possible MPN, but no diagnosis. Feel like I am waiting for something to possibly happen now, like a stroke or heart attack. Heamotoligist just told me that my platelets may be high for absolutely no reason!

[Ebot]

How frustrating for you. But I guess the upside is you’ve had cause to stop and reconsider your lifestyle! Always a silver lining! Hope you get some answers soon.

[Vigiindia in reply to Ebot]

Thanks Ebot!

Yes i already stop thinking more, i have change my lifestyle and since HB and HCT dropping down, whatever it may b but my hem said that am not an true MPN currently... For future they dont know!

[Lori_jones]

Diagnosed my husband on day 4 at mayo clinic