How do I start to find answers?
Hi, I'm 65 and have been sick for a very long time but the last few year especially the last year I started really going down hill with fatigue, brain fog, bone and muscle pain, lack of appetite and so much more! Outside of my Thryoid being low, my doctor could find no answer as to why I'm feeling so horrible. I started looking back through my blood tests and notice my red blood count and hematocrit too and even the hemoglobin in one test... So, I recently mentioned it to my doctor and she said "oh ill have to check into that!" And that was that... Of course out of curiosity I googled the symptoms and the blood tests and came up with Polythemia Vera! I was surprised to see every single symptoms as well as the overwhelming fatigue. So, my question is how do you get started to find answers when you feel somethings not right and your doctor "may" have overlooked repeated blood tests that showed high RBC and Hematocrit? My fear is I've possibly got this blood cancer and it's being overlooked! " Any answer will be of help!" Thanks...
Hi
I'm so glad that you're advocating for yourself! It is ok and fairly common to get a second opinion. Many people do so to be sure of course but also for peace of mind. Are you able to look around and find another doctor in your area? Warm wishes, Katelynn (team member) hildegard45 Katelynn, I'm certainly going to be looking that direction and in the meantime I started on a low dose aspirin to make sure my blood is thin enough, because this is what I've read to be part of the treatment. My RBC is 5.44 normal being 528- hematocrit 47.7 where normal is 46.6... I'm not sure if this is considered high enough for concern my hemoglobin was
"ok" on this particular test but was high on other tests... I'm not sure how high is high???I actually have no knowledge on that front unfortunately I wish I could be more helpful. It would be a good thing to ask a medical professional. I hope you're able to find all the information you're looking for soon! Have a happy holiday 😁 warm wishes, Katelynn (team member) 
You are indeed bringing up great points, and unfortunately it goes back to if the right doctor is indeed reviewing your situation. You may wish to look into finding a hematologist and then review further with an oncologist specialist (if there is indeed a need to do so). There are layers unfortunately in who may be the right fit, but importantly you want someone who can answer the basic questions being asked. Here's a hefty information tool to consider in your search. Wishing you the very best!
https://blood-cancer.com/answers/frequently-asked-questions
I told my family dr for about 2 years I was really tired, not hungry, just didn’t feel right. Was told part getting older. Was 59 male. Oct 27th, 2022 I showed my leg to 3 nurses one evening and they all told me get medical attention. Also showed how my muscles was deteriorating all over my body. Next Morning I went to ER where I spent most the day from 6am until 2:30pm to be told I had cancer bad. I do complete yearly checkups. I don’t blame Dr. still my family Dr. I should paid closer attention or asked family Dr for 2nd opinion. Turns out I have stage 4 Multiple Myeloma, Myelodysplasia, and Vexas Syndrome UBA1. 1-1/2 years and over 70 chemo trips, plus BMT from a donor I’m still here. Bottom line we know our own bodies. We need to look out after our bodies, read all your charts, make notes to take to ask your Dr. be persistent when you know something don’t feel right. I fealt like I aged 30 plus years in less then a year. I’m from Central Ohio. Been to local Hospital for lots chemo treatments. Sent to OSU James Cancer in Columbus Ohio, and sent to NIH. Nationwide Instead Health in Bethesda Maryland where I went through many test. Then and still currently I’m only known human with all 3 at same time. Been a heck of a road. 1/4/24 is first time in many months I actually got hungry and felt the need and desire to eat. All my eating prior was me forcing myself to stay alive. Our Lord has wheel. My family, churches, Comunity, & people from all over world are my support systems. Again nothing negative. Know your own body, know your charts and records. Be your own advocate. God bless and prayers for all that suffer with cancer. Remember their caregivers also.
You are right- no one knows our bodies better than we do. I spent three weeks in a hospital who kept telling me things like I had an ulcer or other things, until one day they finally said, there's a weird shadow on your (seventh) CAT scan. I was like ok, we are done, transfer me to a hospital in the city, which I did, and they ended up getting my cancer into remission. Thankfully. The point is, though, you are right - if you think it's wrong, listen to your gut! Keep on keepin' on, DPM 
thanks for sharing this, . It's a great reminder for all of us! Glad you had a day where you felt like eating. I hope there are many more, and I hope other blessings are coming your way as you and your team decide what is best for you. There are many of us here who are in your corner too.
Angie (Team Member)
I unfortunately went through the same scenario. I went back and forth to my doctors office feeling horrible for about 8 months. Had lab work done, got no answer from the PA. My last visit to her she had blood drawn again and said maybe I needed to see my neurologist for my headaches and someone for the itching. Two days later I received a call from the doctor and he told me he wanted me to see this oncologist right away. I told him I wanted a copy of all my lab work. Being a former nurse, when I got it I knew right away that I had Polycythemia Vera. My platelets were in the 1300's. I got an appointment right away an started phlebotomy to get them down. I am now on Hydroxyurea. Best of Luck to you. Listen to your own body. I mow get copies of all my labs.
I also am a health care worker. I have been doing so many studies on MDS
, like obsessed. My platelets have been rising since 2013. I found an article that the plastics and benzine in PPE is dangerous to our health. Benzene is one of the causes for MDS. Do you have any information or know other medical personnel with MDS?I don't have any personal experience with MDS, unfortunately, but I try my best to stay away from PFE and PPEs and PFOs an all of those as I do think that microplastics can certainly make you unhealthy. As for MDS, though, the best I can do is point you to an article: https://blood-cancer.com/living/mds-now-what Hopefully that helps! Keep on keepin' on, DPM
