Hi everyone I had my bone marrow biopsy done In August along with a bunch of other test went back to the MPN specialist still don’t really know which direction I’m heading I am JAK 2 positive initially was diagnosed with ET from hematologist did not like him so I searched out specialist she said my symptoms are mor PV but JAK 2 at such a low level monitoring over the next 3 months possible 6 to see if there is any change recently turned 45 I have been experiencing symptoms on and off for the past two years my platelets have not went over 600 was wondering if anyone else has such severe symptoms .. headaches burning in my feet my hand get numb and painful itch after taking a bath feet turn blue my chest hurts when I lay down to sleep I can go on and on specialist does not understand why I have so many symptoms if JAK 2is it such a low level supposed to start iron infusions to see if it helps with the fatigue also my hair is coming out so bad I just want to cry any advice from anyone in the meantime would be helpful..
Bone marrow biopsy : Hi everyone I had my bone... - MPN Voice
Bone marrow biopsy
She also tested me for a bacteria because I have heart burns Burning in my stomach it came back positive Supposed to start me on antibiotic she done a bunch of other test Things I was already tested for they came back negative my ferritin levels were always fine so I’m not exactly sure why I’m starting iron infusions I guess it can’t hurt
Did the doc have your BMB results back yet? Certainly the results will be reviewed in detail once they are available. You should also have your own copy of the BMB report.
If you are positive for a bacterial infection in the stomach it certainly needs to be treated. these infections can cause ulcers. The bacterial gastroenteritis can also cause reactive thrombocytosis. Did you find out which type of bacteria this is? Things like Helicobacter pylori (H. pylori) infections can be serious but are treatable. It would be a good idea to know what specific bacterial infection you have for your own records.
If you have been having any internal bleeding due to the infection that could lead to iron deficiency. It would be best for you to know for certain what your current level of iron deficiency is. the doc would not order iron infusion in the absence of diagnosed deficiency. There are other measures of iron levels that matter. Ferritin is just on measure. Here is a bit of info on this.
• Serum iron. This test measures the amount of iron in your blood.
• Serum ferritin. This test measures how much iron is stored in your body. When your iron level is low, your body will pull iron out of “storage” to use.
• Total iron-binding capacity (TIBC). This test tells how much transferrin (a protein) is free to carry iron through your blood. If your TIBC level is high, it means more transferrin is free because you have low iron.
• Unsaturated iron-binding capacity (UIBC). This test measures how much transferrin isn’t attached to iron.
• Transferrin saturation. This test measures the percentage of transferrin that is attached to iron.
webmd.com/a-to-z-guides/iro...
Knowledgeable patients make better decisions about their treatment. Suggest it is in your best interests to be sure the doctor shares all of the information with you that you need to make good decisions.,
Please do let us know how you get on and what you learn.
yes bmb results back I do have ulcers The bacteria you mentioned is the one that came back positive … the iron test she did is different from what they have been doing it’s always cold for me even in the summer.. hair coming out that’s why she suggested an iron infusion.. all I have been doing is reading and researching for the past 6 months every doctor has a different opinion 😕 I asked if the headaches are from this she said no but the doctor under her says yes just so confused I have always been a healthy eater active person but this is just not me days it hurts to walk and so on been on aspirin dose not seem to help JAK 2 was only 5.7 % platelets 577 to 600 findings in biopsy rare large stag horn megakaryoctye and small just a lot of information sorry for the long reply
That is a lot to sort out.
H. Pylori can be a very big problem if not properly treated. Follow through is critical. Do also note that there is a type of feedback loop involved with the MPN. The JAK2 mutation causes an increase in inflammatory cytokines. This promotes a pro-inflammatory environment in the body. Significant GI inflammation also promotes thrombocytosis. Back in 20163 I had a huge spike in GI issues (gastroparesis and gastritis) that was far worse than the ongoing GERD I have experienced for many years. This caused by platelets to spike into the 900s. Much higher than the usual 500s - 700s. Getting your GI issues sorted out is very important.
Regarding headaches, they are a well known MPN symptom. Iron deficiency anemia is also associated with headaches. It sounds like you are iron deficient but your RBCs are within normal limits. This is actually suggestive of PV rather than ET; however, it is most certainly not definitive. Suggest you talk to the MPN Specialist about your status with the iron deficiency and the difference between iron deficiency and anemia. They are not the same thing.
As EPguy remakred, 5.7% MAB is on the low side and more commonly associated with ET rather than PV; however, this is a tendency not an absolute. There are also people with a diagnosis of MPN Unspecified. Sometimes the presentation does not fit neatly into a PV or ET diagnosis.
The aquagenic pruritis does occur more often with PV, but some with ET experience it as well. This is a problem associated with mast cell activity and the release of histamine. Some find relief with antihistamines. Recently, some on the forum have reported success with Beta Alanine. I have no experience with this. If you are interested, perhaps others can weigh in.
I have also experienced significant pain in my feet due to the microvascular manifestation of PV. Fortunately, aspirin resolved this problem for me.
It does sound like you are experiencing many of the secondary symptoms associated with MPNs. These are often more problematic than the primary risk of thrombosis. That has certainly been the case for me. I have had for more trouble with the systemic inflammation caused by the JAK2 mutation than anything else. Fortunately, I have found some things that help. The significant joint pain, arthritis, tendinitis I experience has responded well to curcumin. You may also hear from some on the forum about N-Acetylcysteine, for which there is some support in the literature. Do know that there is potential relief for some of the issues you are dealing with. NOTE: I consult with an Integrative Medicine specialist about complimentary health interventions. I strongly recommend checking with a knowledgeable provider about the use of supplements.
Hope you find answers and relief soon.
Taking curcumin with Besremi is no compatible. knowing it can help the traitment.
I have never seen any contraindication between Besremi and curumin. My MPN Specialist and Internal Medicine doc are aware of my taking both and have no issue with it. Where did you find a contraindication in the literature?
Do you have your actual Jak2 % level? It actually doesn't take much level to make trouble for some while others with quite high levels feel fine. As always, so many different experiences.
As Hunter asked, you are entitled to have your BMB results.
The bad itch after bath is typical of PV more than ET, this may be one reason for your Dr's Dx of PV. But the BMB also has important info on this question.
yes have the results but I don’t understand all of it she says can’t confirm ET because symptoms are PV I believe it was only 5.7 % JAK 2 platelets elevated but red blood count fine White cells are elevated hematocrit when up a little rechecked for all types of auto immune all came back negative it’s just so difficult when you’re used to doing so much and taking care of everyone but this is out of my control
5.7 is low, but as above still enough to make all the MPN effects. But it is low more often in ET vs PV.
The stag horn in your BMB at least by itself is not rare, it's indicative of ET:
"Megakaryocytes in ET were found to have characteristically large size with staghorn multinucleated nuclei and exhibiting large amount of cytoplasm."
ncbi.nlm.nih.gov/pmc/articl...
and:
"A megakaryocyte with "stag horn" nucleus is characteristic of essential thrombocythemia"
researchgate.net/figure/A-m...
--
With HCT up just a little, that would not by itself require PV. (what was your HCT and Hb? HCT) This does not mean at all that your Dr is wrong, we are not qualified to judge that. But likely Dr has other criteria, that are pointing to PV. For example does your BMB include something like:
"BM biopsy showing hypercellularity for age with trilineage growth (panmyelosis)" and blood counts over these amounts? "Hematocrit > 48% Hemoglobin > 16.0 g/dL (women)"
This is from the WHO diagnostic for PV. Note the WHO method does not consider symptoms.
ncbi.nlm.nih.gov/pmc/articl...
hemecorit went up 7 points in less than a month hemoglobin went up 4 Maybe that’s why she can’t say et or PV to early on I tried to post a picture of results but would not let me
I am diagnosed with ET and have aquagenic pruritus.. I have recently started using beta alanine in a powdered form. I use 1/2 tsp dissolved in a glass of water every morning. This has completely eliminated any itching, stinging after showering.
oh bless you. So glad you posted. You will get loads of help on this site. If my platelets go above 450 I feel awful. So I get the fact you are experiencing symptoms.
Let’s hope you start to feel better soon sending you hugs
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