Facebook Pixel
EmpowHER Guest
Q: 

I HAVE RECENTLY BEEN DIAGNOSED WITH A JAK 2 MUTATION. I NEED INFO.

By Anonymous April 17, 2012 - 12:35am
 
Rate This

ON TOP OF MASSIVE FEMALE ISSUES, I AM NOW TOLD I HAVE A MYELOPROLIFERATIVE NEOPLASM AND SINCE MOST PEOPLE WITH THIS HAVE POLYCYTHEMIA VERA, THIS IS WHAT I HAD PUT INTO MY MED RECORDS AS MY NEWEST HALF GUESSED LABEL. IS THERE OTHER TESTING THAT IS IN ANY WAY REQUIRED BEFORE DECIDING WHICH NAME TO ADD TO THE JAK 2 THING, OR ARE DOCTORS ALLOWED TO PUT ANY NAME THEY WANT ON THESE THINGS, JUST SO THEY CAN SHED LIGHT OF THE ENTIRE THING WITH NO MORE INTEREST IN TRYING TO DISCOVER THINGS SUCH AS ACCURACY, AND PATIENTS FUTURE NEED OF KNOWING FOR SURE WHICH ILLNESS IS THE TRUE ONE. IF ONE IS FOUND TO HAVE THIS JAK 2 MUTATION, IS THERE REALLY ANYTHING THAT ABSOLUTELY MUST BE DONE AS FAR AS TREATMENT AND THE LIKE, OR IS IT SAFE TO JUST IGNORE IT AS A BAD KID THAT NEEDS TO BE IGNORED

Add a Comment1 Comments

Anonymous,

I'm sorry to hear about your frustrations. Our health system can be quite frustrating!

If you're not happy with your diagnosis or treatment, it's best to get a second opinion if possible. I'm not familiar with the ins and outs of medical records, so you may want to ask your doctor, or get a second opinion on even what to put down, if it's going to affect you. 

Here's a link to Mayo Clinic that explains all about it-- including tests and treatments. I hope that helps.

http://www.mayoclinic.com/health/polycythemia-vera/DS00919/DSECTION=treatments%2Dand%2Ddrugs

Poke around our community section, too! Sometimes it helps to connect with others that may be going through the same thing. 

http://www.empowher.com/community 

Best,

Danielle.

April 17, 2012 - 6:25am
Image CAPTCHA
Enter the characters shown in the image.
By submitting this form, you agree to EmpowHER's terms of service and privacy policy
Add a Comment

All user-generated information on this site is the opinion of its author only and is not a substitute for medical advice or treatment for any medical conditions. Members and guests are responsible for their own posts and the potential consequences of those posts detailed in our Terms of Service.