After almost 1 year light frequent numbness and then become very bad numbness to feel body was going to explode , to wake up in the middle of night by numbness ,my gp took me serious and request jak 2 what comeback positive.
Most people around my age and with 540 platelet don’t feel any symptoms, while in my case symptoms was very bad , while when my platelet are at around 450 what is just slightly over I still have feel like blood flow problem in my left leg.
The blood test with 540 platelet was without aspirin, early morning and fasting 10 hours.
The day of BMB I decided to go walk to hospital from hotel , was similar circumstances, I was fasting and was morning, by the way I walked 6 km , that was the only difference and the blood test came with 370 platelet. And then after I felt sick for sedation and I have been 1 day in hospital where I got 1 package fluid , the next day the platelet was 345.
I didn’t got yet report of BMB, but the hemathologist called me and said is something there to keep an eye for the future, but at moment I don’t need anything, just keep 1 aspirin a day.
I start believe my symptoms bring us to tested JAK2, otherwise without those symptoms I could be one of many what will realise to have JAK2 at 40 or 50 years old. What I believe my symptoms are not related to MPN.
Hemathologist see the drop in platelet, think I was just dehydrated, in my opinion I’m pretty sure was sedentary make my blood thick and not the bone marrow not the dehydration, because in the moment I walk my blood become good , but even the blood become good, some symptoms stay.
Also when blood start become little bit tick, my left leg get blood flow problem, while other side is fine, if the problem was the tick ness of blood, should be both side same problem.
I’m worry my problems is other, When my blood is not thick still get easily numbness in my hands when I use smartphones in certain position, I wake up with numbness hands and also with 1 finger swollen, most of time I wake up with hands half close and tight like try to hold something.
I’m worry I could have multiple sclerosis and also some narrow vein. For what I see looks like multiple sclerosis have similar symptoms to ET.
I believe the current real problem is not about ET, I believe ET was just caused by sedentary lifestyle and then because JAK2 put us on that way otherwise like most people we wouldn’t found for a while.
Also when I lay in the bed , often I feel some bubbling, noise on my lefts side , not sure if is the spleen by the way the noise is different from stomach noise ,
I don’t know what to do , healthcare take long time to follow.
Tomorrow I will have Doppler ultrasound in my left leg and Tuesday mri on abdomen.
Unfortunately for the neurologist I have to wait till august
Hope someone could have some advice on my symptoms
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Inverter
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Sorry to hear about all your symptoms. I agree that it doesn’t sound like an mpn. It’s good that you’re going to see a neurologist. I hope you find some answers soon.
Do you know yet whether you are positive for the JAK2 or one of the other driver mutations (CALR, MPL)? If you are positive for a driver mutation, experiencing intermittent thrombocytosis, are having MPN symptoms, and your bone marrow morphology includes certain features - the diagnosis would be ET.
Essential thrombocythemia is a diagnosis of exclusion. The 2017 World Health Organization (WHO) diagnostic criteria for essential thrombocythemia include 4 major and 1 minor criteria. Diagnosis requires meeting all 4 major criteria or the first 3 major criteria and the minor criterion. The major criteria are as follows::
Platelet count ≥450 × 109/L
Bone marrow biopsy showing megakaryocyte lineage with increased numbers of enlarged, mature megakaryocytes with no significant increase in neutrophil granulopoiesis or erythropoiesis and, rarely, minor reticulin fibers.
Not meeting WHO criteria for CML, polycythemia vera (PV), primary myelofibrosis, myelodysplastic syndromes, or other myeloid neoplasms.
Presence of JAK2, CALR or MPL mutation
The minor criterion is the presence of a clonal marker or absence of evidence of reactive thrombocytosis (eg, infection, inflammation, iron deficiency anemia).
Regardless of whether you do or do not have a MPN, hydration and exercise are very important. These two things make everyone feel better and have better health.
The diagnosis of ET can be a matter of ruling everything else out. This includes ruling out causes of reactive thrombocytosis.
It will take a few weeks to get your BMB results back. Please do let us know what you learn. Meanwhile suggest you drink up (water not beer)(Rats!) and continue to get daily exercise.
It’s the unknown that’s horrific.All I can say regarding ET is that when my platelets were above 425 I knew. I used to play a guessing game with the heamo. My symptoms were just lethargy. Indeed prior to diagnosis I took over the counter iron tablets. You have a lot more symptoms. I do hope you have answers soon.
Exactly is the unknown what make me scare, I feel like my doctors are over confidents about knowledge of situation , but that I see they ignoring too many singnal what should more investigated. I’m going to private but still don’t know which specialist I should go.
I’m worry to have some other cancer, I’m pretty confident my symptoms are not related to high platelet , especially since I fixed the platelet, now I’m in control of situation at around 370 and numbness is disappeared. By the way the left leg and left feet keep tingling , left knee make me feel like I have reumathoid, basically just left side, looks like is all connected.
Only numbness I get all around body when my platelet get little bit high , basically when I’m in bed, but during the day when I move I don’t get numbness , but the problem in left side still there.
Short breath I had improved but still little
but there .
Dizziness and nausea still there in certain moment , today happened just after dinne.
I’m really worried about have some other kind of cancer , but I don’t know from where to start, I’m not sure which specialist I should booking, what kind of doctor is the one what search for cancer.
In my symptom I feel weird on left side from the spleen till under the feet.
Which specialist I should looking for ? Gastroenterologist or someone else ?
Hello and welcome to the forum Inverter. Looks like you joined here about 3 weeks ago, and by the sound of it you also are still in the process of getting a formal diagnoses. I remember when I was in your shoes 4 years ago. I was terribly sick with anxiety. I have found through experience that anxiety can exacerbate your existing MPN symptoms and bring on other symptoms of it's own. Severe anxiety takes a serious toll on our body functioning and can make you feel very unwell. Splenomegaly is a common issue with MPN's and your doctor usually checks for enlarged spleen. I have had the feeling in my leg that you mentioned and even had the ultrasound like you did but they did not find anything. I think it may be more of a sciatic nerve thing in my case. I can't speak as much for other MPN's, but my PV wreaks havoc with my nervous system. It makes my skin feel like it's on fire in random places all over my body and even causes olfactory hallucinations (false smells), and other types of nerve pain. It does in a way feel like how someone with MS would feel. I could talk all day about symptoms, but the point I want to make is that everything is amplified when you're under stress and when you are not being treated for the MPN. That will all improve for you once you're officially diagnosed, begin treatment, and have had a chance to process it all. It's easy to start thinking about all the other things that could be wrong, but we need to take it one step at a time. I did notice in another one of your posts you mentioned having a HCT of 51. PV elevates other blood counts (especially HCT/RBC's) and platelets. Along with your positive JAK2 I'd highly suspect you have PV, which is also the most common MPN with the JAK2 mutation. Again, once your stress level improves and you've begun treatment (phlebotomies, aspirin, and preferably a cytoreductive therapy), to drop that HCT then your symptoms will begin to ease.
Yes , I recovered from sedation , took almost 48 hours but in the end I got feeling better , under this message I explained all about past and recent blood test
I just received now the BMB report, by the way firstly I will explain few things about my blood test.
Yes I had one blood test 19 April what showed:
Haemoglobin 170
high HCT 0.51
High RBC 6.1
High platelet 525
I think we shouldn’t give much weight on that test , because I had to fasting and I was little bit dehydrated what made the blood more concentrate and fall asleep early the previous day and I was basically in the bed for many hours and then in the morning wake up and straigh away made the blood test.
The previous blood test on 28 February showed :
Ha emoglobine 153
HCT 0.41
RBC 5.56
Platelet high 542
Since 28 February I improved exercise and eat healthy and 1 aspirin a day.
23 March blood test
Haemoglobine 137
HCT 0.41
RBC 5.02
Platelet high 410 ( almost in the range)
29 April blood test ( fasting for BMB)
Haemoglobin 156
HCT 0.47
RBC 5.57
Platelet 370
30 April ( felt sick for sedation and got one package fluid in the vein)
Haemoglobin 147
HCT 0.43
RBC 5.18
Platelet 345
Basically since I started exercise and eat well and drink more since February my platelet back in the range and I can feel my legs are not anymore like before , I can feel my platelets are good now , when I’m under 450 my legs are light in the bed , when I’m obiver 450 I feel legs heavier and I feel tired for days post exercise,and a lot of numbness what wake me up in the middle of night , that’s why I can feel when my platelet are in the range , I would say Right now I’m probably between 350-410, by the way tomorrow I will do blood test again and will see.
I believe we don’t have to take in consideration test with higher HCT , both time was higher 0.47 and 0.51 I was fasting and dehydrated, the other times before and after those test my HCT was between 0.41 and 0.43 wha ti think should be ok.
That’s why I feel the symptoms I got left especially the keep going tingling in my left leg, the nausea with drop of blood pressure di for yesterday after dinner , for not apparent reason i while sit in bed just after finishing eating, i got like I feel like fainting and I checked my pressure 3 times and was 108/ 67
Then after 15 minutes I was getting better and after 30-50 minutes my pressure was back normal 118/80 and I was feeling good again. I feel those symptoms are not related to MPN, I feel could be something else , I feel MPN is not affecting my body , but was just the blood to tick what was exacerbating the symptoms, but since the symptoms of thick blood was removed and I feel much better , some of the symptoms like feel weird only in left side made me worry and should investigate more.
My main concern is using haematologist are too much oriented in they’re speciality and at moment for them is just surveillance, nothing much to do, while in my opinion I need some other specialist to asses whatever could be wrong as soon as possible, but at moment I don’t know yet what kind of doctor I should book , considering my symptoms, maybe an oncologist? Gastroenterologist?
This morning I just got BMB report what looks like confirm my feelings , the report said mildly hypo cellular for my age , mildly increased magakaryocity, and no other specific diagnostic features, considering JAK 2 positive features are consistent with MPN, however because of absence of diagnostic criteria for any of specific , the most applicable diagnosis is MPN unclassified basically too early for make a diagnosis and a further BMB is required to be done in 6-12 months.
For what I understand basically I don’t have no one of tree of MPN at moment and considering the platelet and red blood are in normal range with just eat healthy and exercise, that’s make me even more worry about doctors feeling over confident to just wait when I’m worry could be something else and we are wasting precious time.
I agree on waiting about haematologist side because in effect If blood is in the range and BMB didn’t show anything real bad, however they cannot pretending because that’s is fine is nothing else to worry especially if I have symptoms.
They are basically ignoring my symptoms and that’s the most scary things, they think is everything in my mind again ( is not because I accept very well the situation of having MPN , for me was scary when I saw jak2 positive , but when I did research online and I saw real story in this group where with ET and PV can live good quality life for many years in most case , make me feel happy and nothing to overthinking but living as normal , onky BMB challenge add worry because I had to get 2 and I didn’t know exactly what happened , otherwise I’m very quite and not stressed at all about that )
The only way is doing everything my self , booking private specialist, but the problem I still don’t know which one not sure if oncologist should be the right specialist or gastroenterologist.
I believe my MPN is similar to the people get discovered at 40-50 years old because no symptoms they discover later , I got discovered at 32 because similar symptoms put us on that way , and that was the starting point to understanding what was wrong similarbut without those symptoms we never searched for and we would know ,in my opinion could be something else and just give the opportunity to know about MPN at much early time but most of my symptoms I believe is not related to MPN but something else.
We arrived to jak2 only because my gp ignored all of my symptoms, in the end was just high platelet with numbness leg for him and that’s why made Jak 2 test , if was negative for him was basically nothing else to do , because ignoring all other symptoms, and because was positive at that point he believe we nailed the problem and refer me to 2 haematologist what as well they over confident and keep ignoring my other symptoms what I think should worried even more considering the blood test and BMB didn’t really show any real symptoms about MPN
My doubt is whatever should be my starting point now ? Ct scan ? Pet ? Mri?Chest abdomen ? Endoscopy, coloncosopy, stool test
Book oncologist or gastroenterologist or something else … I’m really confuse about next step, I would like to think what should be the next step if Jak 2 was negative
Thanks to everyone , I think I have particular situation and not common to most people in this group , I really appreciate all of your message
It is a lot to take in a hard to process it all at first. There is a lot to learn. I was in my 30s when I was diagnosed with ET. That was before we even knew about the JAK2 mutation. I am now age 66, having progressed to PV about 8 years ago. You are absolutely correct that you can anticipate living a long high quality life if you take care of your health. Hydration, diet, exercise and addressing the systemic inflammation that the JAK2 mutation causes are all very important to managing a MPN. some people do end up in the MPM Unclassified category. Perhaps your situation will become more clear over time. you should plan to have lots of time to figure things out.
Managing stress is also a key component of managing a MPN. Stress exacerbates inflammation and other aspects of MPNs (and other problems). This is an issue I learned the hard way when I got trapped in a spiral where stress caused GI problems and the pain from the GI problems made me even more stressed/anxious. Things got quite bad before i was able to break out of the spiral. The pro-inflammatory aspect f the JAk2 mutation was also a part of the problem that I did not understand at the time.
You have enough going on that you may need to involve several specialists. One of the most important is an MPN Specialist. That doctor will be a key player in sorting everything out.
I agree with Hunter here on the stress effects. I had a current stress period and it has increased my MPN symptoms. Of course we can't always get rid of the source of stress. But in your case it seems you're looking better on your blood numbers so that is a good reason to have less stress.
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Also your BMB is full of "normal" items, that is good.
<<Myeloid cells are involved in trilineage hematopoiesis. This term refers to the normal production by your bone marrow of three blood cell lines: red blood cells, certain white blood cells, and platelets.>>
Again you have "normal" in this definition.
So some good reasons for lower stress. My results had plenty of "not-normal"
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You may want to discuss with Dr follow up on your Jak2 allele over time. For example maybe get another test next year. Your AB (allele burden) is quite low so far for MPN at 2.41%. Most of us are diagnosed with much higher than that.
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