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Polycythemia & Bone marrow Disorders screening
hello everyone good morning And it’s great to talk to you.At the beginning of 2022, I began to feel terrible pain in my stomach. I went to an internist, and he made me underwent cbc test, which showed that hemoglobin was 20. He ordered me to see a hematologist, who in turn for 2 years made me underwent a lot of exams for the heart, then the kidneys, then the liver, and hepatitis viruses which all came back normal .And the lung,he also asked me to donate blood more than 12 times in 2 years and he gave me a lot of time after every blood donation to follow up the hemoglobin.and he made me underwent these tests:
JAK2 V617F & JAK2 Exon 12 which came back Not detected
BCR ABL not detected also
MPL & Calr Mutations Not detected also
the problem is that he told me that I must undergo a bone marrow aspiration & biopsy to make sure that there’s no disorder in the bone marrow because there is no secondary cause for high hemoglobin, and that hemoglobin always goes up after a while from the blood donation and the spleen is moderately enlarged, and that I am not Smoker.
I am terrified of undergoing a bone marrow aspiration biopsy,What should I do?
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Me too,I’m having one on Tuesday or Wednesday march 5 or 6,so is it your first time?
Did you underwent for tests such as
JAK2 V617F
JAK2 Exon 12
BCR ABL
MPL ,CALR Mutations
EPO Level
LOL. You fooled me!! I should have looked closer! But I love your photo anyway! ☺️
It is possible for people to have disorders without having any genetic or acquired genetic issues. As I mentioned, some blood conditions can take a lot of sleuthing before coming to a diagnosis. The biopsy may not be definitive but may help rule out certain conditions or point to others. I know it can be really frustrating in the meantime! I had a very aggressive blood cancer and have had 13 biopsies over the course of my treatment. So I can empathize with your anxiety. I think you’ll find it’s not so bad and it’s over quickly.
I was going to ask about your EPO level. But that’s all good as well. Hmm. You’re very young for this, but do you know if you have sleep apnea or not?
Oh thank you so much🙏.
Wow 13 biopsies,What a great fierce fighter you are !❤️
Yeah my doc said to me that aspiration+biopsy can at least confirm or rule out PV,Myeloproiferative or Myelofiorosis disorders.
I heard that Patients with sleep apnea often complain of extreme daytime sleepiness, loud snoring with episodes of choking during sleep, temporary cessation of breathing, and sudden awakening with loud snoring.and for me non of these happen to me.
So the bone marrow test going to hurt right?! ,how it feel like when I get anesthesia or when the doc ins the needle in the bone?
Oh I forgot,the doc also asked for (Reticulin Stain)besides BMA&Biposy
What does it mean?
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1 ReactionNo.
Yes, it is.
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3 ReactionsWhen you have a bone marrow exam and biopsy, there are 2 or more samples taken. This is the heart of the blood manufacturing site in the body so a sample from the marrow is important.
The first sample is an aspirated sample of the fluid in the marrow. The second is a core sample of the spongy part of the marrow. This is done with a needle. There’s no big incision or stitches involved.
The needle used to give the local anesthetic is small in diameter. You may feel a tiny poke with that but it numbs the tissue very quickly. It’s much smaller than the needle used to draw blood in your arm when you’ve had labs run.
You’ll be asked to lie on your side or tummy for the procedure. You’ll still have your skivvies on but the doctor will lower the waistband so that the waist area above your bum is exposed. Don’t worry about being embarrassed because this is so routine for them. I’ve had so many of these that sometimes, even being an old lady, I wear some silly underwear with ducks on or something. Just for laughs. 😂
The doctor will then use a pen or marker to mark the point where they want to take the sample. The pen can also used to see if you’re numb. Then a little larger needle is used to take the core sample. I didn’t feel anything sharp but it was uncomfortable. It felt like a deep tugging feeling. However it didn’t last very long. Once the doctor is finished, that’s basically it. Like I said, no stitches.
You will have to wear a bandaid for 24 hours and no showering for 24 hours. The bandaid will have a thicker, but small gauze square under it to give some pressure to stop any bleeding. Much like when you get a blood sample taken.
That’s it! Sometimes there’s discomfort for a day or so. I had one that was tender to the touch for a week. Not a sharp or throbbing pain, more like a bruise. You won’t want to play pickup basketball or go jogging for 24 hours either but going to work is fine.
The reticulin stain is one of several special use stains used on biopsies. Each one has an affinity for particular extra/intra-cellular structures, or particular microorganisms. In the case of a bone marrow biopsy it can be used to check for fibrosis of the marrow. Another condition that can affect blood cell production. Your doctor is covering all the bases. ☺️
I hope this answers a few of your questions. Don’t hesitate if you have more!
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2 ReactionsHi! I answered most of your questions in my reply about the reticulin stain, including the anesthetic and the ouch. If you don’t see it, here’s the link. https://connect.mayoclinic.org/comment/1022675/
About sleep apnea, you’re right. Most people have all of the symptoms you’re describing. You look too young to be having that issue.
One more thing about the biopsy that I didn’t mention. Some clinics offer a light sedation where you’d be asleep for the 10 or so minutes it takes for the biopsy. Then you wouldn’t feel a thing. You might want to ask if your doctor offers that! It really helps.
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2 ReactionsI didn’t feel any pain at all. Had topical anesthesia.
Afterwards slight discomfort, nothing more.
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3 Reactions