Do you have sleep apnea, that could be a polycell cause w a negative JAK. Sorry for speculating , waiting for my (RBC 6.00) brothers JAK-2 to come back , until I'm almost certain it's due to hypoventilation/sleep apnea .
Do you have sleep apnea, that could be a polycell cause w a negative JAK. Sorry for speculating , waiting for my (RBC 6.00) brothers JAK-2 to come back , until I'm almost certain it's due to hypoventilation/sleep apnea .
My labs were always fine and my platelets were high the previous year. In 12 months my hemoglobin and hematocrit went very high along with platelets. My PC was concerned immediately and said she’s worried I may have a bone marrow issue. Just from the labs? She was correct sadly. I’m a 56 yr old female who never had any health issues and wasn’t on any medications. After time to process, I’m hitting it head on knowing that it least I can be treated and caught it within a year. It’s not a death sentence 😉
I'm 41 year female, and up until this year I haven’t had any real.health issues. I realize that these symptoms/results are not good and I need to find out what's going on sooner than later cuz I'm slowly getting worse.
My main goal is to find out what exactly is wrong, give it a name, and figure out the best ways to manage the symptoms.
I mean, I've got things to look forward to like going back to school at the end of June, my volunteer work that counts towards my internship, hanging out with friends, etc.
Combination of lower ferritin levels, ulcers in stomach and lower intestine and a blood clot - had been otherwise healthy
Additional reference dx in another city who was looking at my internal bleeding suggested checking marrow were JAK 2 positive was diagnosed
Taking 81 mg aspirin, hydroxyurea and a couple of phlebotomies.
Get tired more quickly but still as active as I can be. Other symptoms in control although ferritin a bit low as expected with this disease
Has been a journey and diagnosis was slow in coming
Hoping better treatments forthcoming - seeing dx at Mayo annually moving forward
Good luck all!
Do you have sleep apnea, that could be a polycell cause w a negative JAK. Sorry for speculating , waiting for my (RBC 6.00) brothers JAK-2 to come back , until I'm almost certain it's due to hypoventilation/sleep apnea .
I thought my PV had a good chance of being partly due to sleep apnea, and had the full fledged sleepover test, but it was negative and sadly did not give me any new information on my insomnia and sleep difficulties. I am currently trying to be honest with myself as to whether my sleep was worse while on Besremi, or without it. The whole situation becomes more and more stressful to me, with all the maybes and try thises so it is probably going to be poor sleep until I learn to handle the uncertainty and endlessness of PV. I'm still resentful at the rude intrusion of this disease into my life; I don't like how it pushes in and puts its feet up on my couch and wants to talk about problems all the time.
I had horrible thorax itching years before being diagnosed with Myelofibrosis. No specialist could determine the cause. My primary at that time laughed at me. She said they almost never figure out the source of itching. It was only after the hematology oncologist heard about my prior itching period that “he” said that the itching was likely the first sign of the Myelofibrosis. Nothing is worse that itching!
I had horrible thorax itching years before being diagnosed with Myelofibrosis. No specialist could determine the cause. My primary at that time laughed at me. She said they almost never figure out the source of itching. It was only after the hematology oncologist heard about my prior itching period that “he” said that the itching was likely the first sign of the Myelofibrosis. Nothing is worse that itching!
Started with horrible itching after bathing. Elevated hematocrit (57) led to biopsy to confirm. Now, 2 years later, itching has abated, but fatigue every day and lightheadedness. Treated for skin cancer, taking 1000 hydroxyurea and fighting thru. I am soon to be 79.
Good luck, it takes some getting used to and a positive thinking hematologist.
jjd
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Its ok. I'm grateful for everyones input. As far as I know I don't have sleep apnea.
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2 ReactionsI do but very mild but I appreciate the info I’ll surely look into it! Enjoy your day and best of luck!
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2 ReactionsI'm 41 year female, and up until this year I haven’t had any real.health issues. I realize that these symptoms/results are not good and I need to find out what's going on sooner than later cuz I'm slowly getting worse.
My main goal is to find out what exactly is wrong, give it a name, and figure out the best ways to manage the symptoms.
I mean, I've got things to look forward to like going back to school at the end of June, my volunteer work that counts towards my internship, hanging out with friends, etc.
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Like -
Helpful -
Hug
4 ReactionsCombination of lower ferritin levels, ulcers in stomach and lower intestine and a blood clot - had been otherwise healthy
Additional reference dx in another city who was looking at my internal bleeding suggested checking marrow were JAK 2 positive was diagnosed
Taking 81 mg aspirin, hydroxyurea and a couple of phlebotomies.
Get tired more quickly but still as active as I can be. Other symptoms in control although ferritin a bit low as expected with this disease
Has been a journey and diagnosis was slow in coming
Hoping better treatments forthcoming - seeing dx at Mayo annually moving forward
Good luck all!
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Like -
Helpful -
Hug
5 ReactionsI thought my PV had a good chance of being partly due to sleep apnea, and had the full fledged sleepover test, but it was negative and sadly did not give me any new information on my insomnia and sleep difficulties. I am currently trying to be honest with myself as to whether my sleep was worse while on Besremi, or without it. The whole situation becomes more and more stressful to me, with all the maybes and try thises so it is probably going to be poor sleep until I learn to handle the uncertainty and endlessness of PV. I'm still resentful at the rude intrusion of this disease into my life; I don't like how it pushes in and puts its feet up on my couch and wants to talk about problems all the time.
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5 ReactionsLittle motto for everyone on their bad days:
I don't quit just cuz my blood is thick!
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1 ReactionItching
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2 ReactionsI had horrible thorax itching years before being diagnosed with Myelofibrosis. No specialist could determine the cause. My primary at that time laughed at me. She said they almost never figure out the source of itching. It was only after the hematology oncologist heard about my prior itching period that “he” said that the itching was likely the first sign of the Myelofibrosis. Nothing is worse that itching!
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2 ReactionsI’ve found chewable children’s Benadryl really helps.
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1 ReactionStarted with horrible itching after bathing. Elevated hematocrit (57) led to biopsy to confirm. Now, 2 years later, itching has abated, but fatigue every day and lightheadedness. Treated for skin cancer, taking 1000 hydroxyurea and fighting thru. I am soon to be 79.
Good luck, it takes some getting used to and a positive thinking hematologist.
jjd
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2 Reactions