Thank you for the reply! I am in Cypress, TX if you’re near there. 😉
I have started a list of odd symptoms as well as generalized questions I plan on asking.
My insurance is UHC Kelsey Seybold, so as far as I know, I don’t have the option to go to places like MD Anderson or Mayo, but I’m definitely going to investigate. I don’t think there’s an MPN specialist with Kelsey. 😥
What?? I am near Cypress TX! And I use Kelsey! I have a great doctor downtown but he is retiring and I’m super sad. I was referred by my nurse that does my phlebotomies to another oncologist/hematologist in the Fort Bend Kelsey. He also goes to other Kelsey locations too. My app is Wednesday, and if I think he’s good I can message you his name and info. I am in Houston by Katy border. Barker Cypress/ FM 529 area. I check on here every morning so we can keep in touch. What a small world’
What?? I am near Cypress TX! And I use Kelsey! I have a great doctor downtown but he is retiring and I’m super sad. I was referred by my nurse that does my phlebotomies to another oncologist/hematologist in the Fort Bend Kelsey. He also goes to other Kelsey locations too. My app is Wednesday, and if I think he’s good I can message you his name and info. I am in Houston by Katy border. Barker Cypress/ FM 529 area. I check on here every morning so we can keep in touch. What a small world’
Hi @momoffivetoo and @nypara66, I love seeing members connect like this! It is a small world sometimes, isn’t it?
If you want to send a private message you simply click on the avatar (photo) of the person you want to message.
That will open to View Profile
Click on View Profile and the page will open to a blue box with the avatar in the upper left corner. Beneath that you’ll see Send A Private Message with a little blue envelope icon.
Easy peasy.
You are literally 15-20 minutes from me! We could def meet for coffee. Let’s wait until after my app. Which is Tuesday and then I can share the info with you. Email me and I will check later. Nice to almost meet you 🙂
You are literally 15-20 minutes from me! We could def meet for coffee. Let’s wait until after my app. Which is Tuesday and then I can share the info with you. Email me and I will check later. Nice to almost meet you 🙂
You are literally 15-20 minutes from me! We could def meet for coffee. Let’s wait until after my app. Which is Tuesday and then I can share the info with you. Email me and I will check later. Nice to almost meet you 🙂
@nypara66 and @momoffivetoo, I have removed your personal contact information from the public forum. Please use the secure private messaging to share contact information.
Good morning! I wish we could have a cup of coffee together. Your post sounds familiar to my experience. I am mom to 5 kids as well. Diagnosed with PV 2 years ago at age 47 after several years of my labs being "off" and having a migraine aura but no headache for several months. I was told it was perimenopause, stress, migraine headache, etc. I also had a horrendous itchy rash on my chin. My dentist suggested I switch toothpaste, and a dermatologist suggested I start a steroid cream to stop the itchiness and rash. None of these remedies worked. Thankfully, my incredibly kind and thorough endocrinologist in Charleston did a little digging and suggested I get tested for the JAK 2 mutation. Blood tests, JAK 2 mutation, and a bone marrow biopsy indicated PV. I went to Mayo in Jacksonville and had a great appointment with a very knowledgeable doctor. He helped put my mind at ease. I then found a doctor closer to home who specializes in blood cancer. I started on hydroxy urea then switched to Jakafi after 6 months. Jakafi was good at lowering night sweats and itchy face, but I found it affected the absorption of my thyroid meds (I do not have a thyroid). I found myself pretty depressed and anxious. I have recently switched back to Hydroxyurea and my thyroid numbers are looking much better. All this to say, I can definitely relate to you. I have learned that not all doctors really know about polycythemia vera. Mayo certainly does, and you can do a search for a mpn specialists to find a doctor who knows the disease and is close to your location. Also, this message board is super helpful, and the mentors are amazing - a real blessing!
I was also diagnosed two years ago at 47. After my daughter was born, I started experiencing headaches with aura's. Always the same. I'd wake up with a faint "tension headache" that lingered. By early afternoon, I would have some type of vision disturbance then I get tingling in my fingers, it would travel up to my face. By the time it hit my lips all the symptoms would disappear. I ended up in the ER when the headaches changed and were so bad that I was throwing up. The ER doctor picked up on my elevated RBC. It took about 4 months but finally was approved for Jak 2 test, which came back positive. So many of my symptoms were passed off as perimenopause. I'm doing well...need to exercise more. I get phlebotomies about every 9 months and take 162mg of aspirin a day. I hear so many on medication, wondering what the determination is for this?!
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What?? I am near Cypress TX! And I use Kelsey! I have a great doctor downtown but he is retiring and I’m super sad. I was referred by my nurse that does my phlebotomies to another oncologist/hematologist in the Fort Bend Kelsey. He also goes to other Kelsey locations too. My app is Wednesday, and if I think he’s good I can message you his name and info. I am in Houston by Katy border. Barker Cypress/ FM 529 area. I check on here every morning so we can keep in touch. What a small world’
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1 ReactionI was SO hoping you were close, that’s why I put my city in there! I’m absolutely up for coffee if you ever have time. 😉
I would definitely appreciate guidance on good Kelsey hematologists please. I am worried about getting a good one.
We are near 290/Huffmeister! Is there a way I can private message you my contact information?
Hi @momoffivetoo and @nypara66, I love seeing members connect like this! It is a small world sometimes, isn’t it?
If you want to send a private message you simply click on the avatar (photo) of the person you want to message.
That will open to View Profile
Click on View Profile and the page will open to a blue box with the avatar in the upper left corner. Beneath that you’ll see Send A Private Message with a little blue envelope icon.
Easy peasy.
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Helpful -
Hug
1 ReactionYou are literally 15-20 minutes from me! We could def meet for coffee. Let’s wait until after my app. Which is Tuesday and then I can share the info with you. Email me and I will check later. Nice to almost meet you 🙂
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1 ReactionI will send an email shortly, and that sounds great! Hope your appointment goes well. 😉
Nice to almost meet you as well! 🤣
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1 Reaction@nypara66 and @momoffivetoo, I have removed your personal contact information from the public forum. Please use the secure private messaging to share contact information.
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1 ReactionI was also diagnosed two years ago at 47. After my daughter was born, I started experiencing headaches with aura's. Always the same. I'd wake up with a faint "tension headache" that lingered. By early afternoon, I would have some type of vision disturbance then I get tingling in my fingers, it would travel up to my face. By the time it hit my lips all the symptoms would disappear. I ended up in the ER when the headaches changed and were so bad that I was throwing up. The ER doctor picked up on my elevated RBC. It took about 4 months but finally was approved for Jak 2 test, which came back positive. So many of my symptoms were passed off as perimenopause. I'm doing well...need to exercise more. I get phlebotomies about every 9 months and take 162mg of aspirin a day. I hear so many on medication, wondering what the determination is for this?!