Need a good MPN specialist in California.

[faith949]

Hi I’m 37, I am currently dealing with elevated platelets they are in the millions and still no doctor has diagnosed me with anything. One doctor even said sometimes there is no medicine for it. I need a recommendation for a good MPN doctor please.

[hunter5582]

Many docs have little/no expertise in dealing with MPNs. There are of course treatments for them. Here is a list of MPN-expert docs.mpnforum.com/list-hem./ .

[mbr8076]

Hi faith949,What part of CA? I am in Southern Cali and I go to Dr Angela Fleishman in Costa Mesa; she is with Irvine Health. She is a MPN specialist and has written many articles about MPN’s and the nutrition connection. I was diagnosed following a heart attack at the age of 58 when my platelets were 1 million and because of my age (near 60) and having had a thrombotic event I was put on Hydroxyurea (chemo pill). But, I understand if you are young and have not had a thrombotic event they tend to watch with no treatment:/

Hope you can find a specialist so you feel more settled about your treatment or lack of.

[faith949 in reply to mbr8076]

That’s my doctor 😳 she has not done anything or found anything I don’t think she knows as much

[mbr8076 in reply to faith949]

Oh wow sorry to hear that:/ I just moved from CT to CA in July and thought I found an MPN specialist:/ I saw her only once in September to review my records from CT.

[faith949 in reply to mbr8076]

She is good I guess but not for me .. she has no young patients and doesn’t really tell me what I have and keeps giving me different medications that don’t work . I think there are more MPN specialists in ca on the list someone posted here.

[EPguy in reply to faith949]

I found this old post. Can you say which medications didn't work for you?

I have been seeing an associate of Dr. Nimit Sudan, the Dr of margaritampn below.

My Dr is Dr. Solomon Hamburg.

uclahealth.org/providers/so...

His bio includes a specific focus on MPN. He does know it well. He has deep knowledge of Jakafi (Rux) but knows MPN more generally and will address your questions in detail during your visit. Don't expect any clinical notes after your visit however. You need to message him for any relevant follow up questions.

[faith949 in reply to mbr8076]

I need to find another MPN specialist all she did for me was give me narcotics for my pain and she is so confused about my mutations

[mbr8076 in reply to faith949]

I do not have any pain so she just continued me on my treatment from CT for ET JAK 2 positive.

[Pte82]

Maybe this list will be helpful:

pvreporter.com/mpn-speciali...

[PrinceA]

hi, I'm gong to see Casey O'Connell in USC LA in Feb. Not sure if she is good, its my first appointment. But when I was reaching for MPN specialist I found David S. Snyder in City of Hope which I thought he is good but my insurance didn't cover him.

[Kseely]

Faith949, looks like we’ve posted the same question. I’m in Fresno, CA and have seen 3 different MPN specialists. So far, I’ve really liked Haris Ali at City of Hope. I was assigned to him when trying to get in with David Synder. Haris takes the time to listen and is really responsive to any questions I have even after my appointment.

I was diagnosed in 2019 when I was 39 and my platelets were just over a million. Was put on Hydrea and my platelets started coming down. I decided to switch over to Pegasys in 2020 and my platelets currently float around 400. Also on daily baby aspirin.

Oh, if you are interested in a more natural approach check out JessicaHarshbarger.com. Read her bio, she even posts her platelet levels.

Good luck. Let me know if you come across any other good recommendations! Thanks

[faith949 in reply to Kseely]

Thank you ❤️

[ETOhio21]

I can not help with an MPN specialist in California but can relate to you frustration, my platelet count was a million for over 4 years that I know of and my doc never said a word about, moved and switched docs, new one got me to a hemotologist right away and have been on 1500 Hydrea since October, platelets were at 470 last count in January, I have been very happy with my Hemotologist, but am considering seeing an mpn specialist just for the second opinion. There is one here in Ohio at the Cleveland Clinic. Best of luck!

[margaritampn]

Hi Faith949,

I live in Los Angeles. Diagnosed with MPN in November 2020. I am Jak 2 +. I started with 1.2M platelets. Prescribed with 500mg hydroxyurea in January then increased to 1000mg in February and now my platelets are at 250k and my rbc and wbc are back to normal (all used to be elavated).

My doctor is Dr. Nimit Sudan from UCLA. He has a clinic in Santa Clarita. I am sure he has other clinics. I also went to see Dr. Schiller from UCLA in Santa Monica. He’s an MPN specialist.

I hope this helps!

[Pat032018]

Hi Faith 949,

I used to live in Orange County but I do not recommend my hematologist from Laguna Niguel. However, I saw in youtube.com Dr. Angela Fleischman from UC Irvine medical who lectures on MPN.

I will put a lot of weight and favor hematologist who lectures on MPN.

Hope you find a good hematologist.

Good luck with search for a good doctor!