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PV positive & Jak2 neg - good thing??
Blood Cancers & Disorders | Last Active: Jul 14, 2023 | Replies (36)Comment receiving replies
My doctor who I had for several years retired so then I found an excellent DO however she stopped taking PCP work after the first year which was last year so then I found another for PCP items, well it was that PCP new to me who suspected the PV after lab work and questions and sent me to her group hematologist however when I called to that office the clerk was rude to me so I struck out on my own and found one closer to me. Then I sent the PCP her name and asked to change her referral. If they are rude at the start it's not a good sign. This hematologist/oncologist is connected to the cancer center in Houston so like I told her, if it's serious or not having both hematologist and oncologist in one I have covered both. I like her too so far.
Has anyone have trouble with dropping energy, like just bam! in the day like wow just a big drop where you feel like you should lay down and take a nap feeling.?
Replies to "My doctor who I had for several years retired so then I found an excellent DO..."
Hi Chella,
Yes, I have serious fatigue issues. I often need a nap in the afternoon. I seem to need a lot of sleep in general.
I must also pace myself. In fact, my law school accommodates me by splitting each of my exams into two pieces so that I only take one half exam per day during midterms and finals. I wonder how I will manage the bar exam!
I would love the name of your hematologist in Houston. I am searching and reading up on healthgrades.com to find someone within driving distance. My doctor doesn't believe I have PV although my symptoms are text book. The doc I liked moved two states away.
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Yes, I've been struggling with very bad fatigue and if I do to much one day, I'm shot for the next couple days. I've had to really cut back a lot on my activity, very difficult to work so I'm filing for temporary disability. Plus I have my own policy where I'll get 1k a month. I love what I do (Senior Advisor) and really want to work. I was just diagnosed in April so still trying to find the right hemoglobin number that works for me where I feelmore myself. I suspect I'm anemic from the 5 pints removed and that caused bad fatigue as well. I go this Tues for a CBC and hoping they'll approve a Saline infusion to help me feel better.
My GP feels very strongly I'll get back to very close to my usual energy level. What depresses me a little is I'm reading posts from some that have had it for years and still have bad fatigue. The shortness of breath is also bad and very painful hands every morning and seems to be lingering longer now. Big plus is after they took about 3 pints, my crashing headaches stopped.
I'm gluten free and dairy free, they cause inflammation. If I eat gluten my joints ache a lot, has no affect on my stomach. Boy do I miss good bread but not worth what it does to my body.
Hang in there, we're all in this together. This forum is a lifeline for me!