I hope someone here been trough same things and could bring some experience or advice.
I have bad feelings of tingling and numbness in my left side of body , is been over 3 years already and get worst .
because of those symptoms and platelet little bit high , 550 I discovered to be Jack 2 positive. The symptoms is very tired legs, legs not recovery even for days for small activity, numbness and tingling.
I was thinking the main problem was the platelet, my blood was so dry could just get taken by syringe aspiration. In this last 2 years I put lot of effort to fight with this illnes , aspirin everyday, double idratation then before, eat well, use turmeric, capsicum almost daily .
My blood test since over 1 year are simply perfect, nothing wrong with that 414 platelet, 0.46 HCT , everything is really perfect in the range, by the way my symptoms is still there .
Numbness and tingling in my left leg and foot , 24/24 -7/7 tiredness hard to recovery , how is that possible if my blood is good ?
Anyone else experiencing similar things ? Jack 2 positive can give this symptoms even if the blood is good ?
Or must be something else the problem?
I did last year brain and spine mri and I have been cleared as nothing can see … I’m waiting result of another mri brain spine wirh different neurologist, and also compare with previous mri.
I did 2 times in 1 year distance Doppler ultrasound in my left leg and didn’t found anything wrong with blood flow.
what else could be? Or what else test I should do ?
doctor here are not really friendly , they see me too young and they don’t really care much took me 1 year just to get tested for Jack 2 , they don’t really understand how this numbness is really like my legs is get frying on oil ,never let me go especially when I go to bed , is very hard keep going like that and also worry could be something else there what is going forward.
I never been referred to oncologist and not sure if still something related to blood and I should do some other blood test , doctor are not advice nothing or search for nothing but just see my blood as good and accept the fact there is nothing and don’t understand and listen about my symptoms and is very frustrating.
I hope someone can bring some idea or been trough similar and found solution
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Sorry to hear your troubles, I can relate. Is your blood still so dry with your blood counts all good?
That level of neuro complications is not common with controlled MPN, there could be another condition too. I have auto immune Sjogren's and went thru many similar tests like you have, all found nothing.
Have you done EMG/NCS studies? These are electrical nerve tests. There are also genetic tests they can do, sort of like our MPN jak2 tests, but looking for nerve indicators.
Do you have a rheumatologist? This was my next step. I've had maybe 20 types of blood tests for autoimune (A-I) disease, one finally found something.
Thanks a lot for your answer , been very frustrating and because I’m only 34 years old too many doctors have this conception we cannot have cancer or similar things and I get ignored , is very helpful for me to try to point them in the right direction , as I was thinking if the blood is under control couldn’t be that the origin of my symptoms, also I said since start my symptoms was only left side , if was ability blood should have affected all, but the problem in Australia GP dosent refer easily to specialist and specialist just care about their side and that’s it, basically always is a blind corner what make harder to ask next step, basically GP refer to haematologist, haematologist see good blood test and just say see you next 6 months , and keep going like that and no one really care about what I’m going trough.
No, I don’t have reumahtologist yet , I will try to ask to my GP to refer me , nerve conduction test I did last year and found nothing , but recently I did again and was 2 test one have kind of sound like microphone when move . I have next appointment and result with neurologist in March.
Do you know what kind of other genetic test I could search for ?
For the autoimmune disease blood test is the rheumatologist refer for this blood test ? Could you please make a list of this test ?
Thank you so much , your answer give me hope to hopefully found the cause of my problems
I finally put together the various tests you asked about that Drs did seeking a Dx of my troubles. See below. These were ordered by one of PCP, Rheum and Neuro Drs. These should find most neuro or rheum troubles. But some conditions can be severe and nothing measurable is positive. Neuro and Rheum are black arts in many ways.
-Have your Drs confirmed for sure no blood clots with the Doppler ultrasound? Having your entire left leg numb would be quite a clot one would expect if that were the reason. Along with the trembling you noted in a prior post further studies make sense. I've also had whole left leg numbness, twitching and temporary paralysis, and lots more, in my messed up journey.
--
My neuro/rheum tests (the ones with ** are esp common rheum tests :
-------
PROTEIN ELECTROPHORESIS SERUM
CK, TOTAL
ACETYLCHOLINE RECEP BINDING
CYCLIC CITRUL PEPTIDE AB, IGG
VITAMIN B1, WHOLE BLOOD
TSH WITH REFLEX FT4, FT3
VITAMIN B12
LEAD,WHOLE BLOOD
ARSENIC, WHOLE BLOOD
CADMIUM, WHOLE BLOOD
MERCURY, WHOLE BLOOD
**RHEUMATOID FACTOR
**C-REACTIVE PROTEIN
**SEDIMENTATION RATE, ERYTHROCYTE
**ANA
IMMUNOFIXATION ELECTROPHORESIS
PROTEIN ELECTROPHORESIS SERUM
SSA/SSB ANTIBODIES
SensoriMotor Neuropathy Profile with Recombx®-Complete (Neuro Genetic test for ~100 genes)
SSA 52 and 60 (Ro) ENA antibodies, IgG
CORTISOL
C3 and C4 COMPLEMENT
IGG, SERUM
CRYOCRIT
LYME (it can be a neuro condition)
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Procedures:
ELECTROMYOGRAM NERVE CONDUCTION ST (EMG/NCS) (mine had positive followed by 2 negatives)
AUTONOMIC REFLEX SCREEN ( Autonomic functions in the office) These problems are common in A-I (autoimmune) disease
Thanks a lot , I will try to ask my gp and specialist about those test.
I did 2 times in 2 years the Doppler in my left leg, from the abdomen till the foot, 2 different medical Center and both said everything is normal , the blood flow is normal .
I just changed gp , recently this is already my third one , first one I been there 10 times in 1 year to keep saying about my very bad numbness and other symptoms, and he never cared, after 1 year he decide to finally do Jack 2 test and even came positive didn’t call me for result and he actually was in panic he didn’t even checked my result and saw for the first time when I booked appointment.
Second gp after Doppler sl didn’t show anything normal , said is just in my mind and his solution was expensive acupuncture treatment in his own medical Center . Very frustrating having a problem 24 hours a day and the one should help are denying any kind of help and pretending is everything in my mind when the problem is real and is like burning every single minutes of my life.
I hope my current gp and with this indication I will be able to search more and excluding other things and hopefully arriving at what is causing this problem .
Sorry to hear about the ongoing troubles. What you are describing is not uncommon for people with MPNs in a variety of ways. MPNs are rare disorders. Most doctors, including hematologists have little experience with them. Some know almost nothing about them. It is very important to consult with a MPN Specialist. This is the only way to ensure optimal care. Here is a list. mpnforum.com/list-hem./
It is important to understand that there is more to MPNs than the number of blood cells. Given that you only describe thrombocytosis and are JAK2 positive, it sounds like you have Essential Thrombocythemia. There are some things to know.
The absolute number of platelets does not correlate with risk of thrombosis. It is more complex than that. The issue has more to do with how the blood cells behave than how many there are. The JAK2 mutation can alter how blood cells behave, making them extra sticky, thus more prone to forming clots and adhering to the vascular endothelium. We can experience not just clots but microvascular symptoms as a result.
The absolute number of platelets does not necessarily correlate with secondary symptoms, such as fatigue, insomnia, night sweats, pruritis, etc. The JAK2 mutation does more than make too many blood cells. It also causes the overproduction of inflammatory cytokines. This is thought to be responsible for many of the secondary symptoms people with MPNs experience.
The tingling and numbness your describe could be a number of things, including a microvascular issue. Paresthesia is common in people with MPNs. Here is a bit of information on this topic. mympnteam.com/resources/num....
It sounds like you have already been evaluated for peripheral neuropathy. It is important to remember that we can have co-occurring disorders that are not related to the MPN. It can be difficult to sort out because MPNs can manifest in so many different ways that are not always recognized as related.
While you are on the younger side for a MPN, there are plenty of people here on the forum who were diagnosed in their thirties or earlier. I was diagnosed in my 30s, over 30 years ago. My daughter is also JAK2 positive and was diagnosed in her 30s.
WIth proper management, people with ET can live a normal lifespan and live a good quality of life. Many symptoms can be managed with proper care. Finding an experienced MPN Specialist is essential. It is also essential to be your own best advocate, Educated and assertive patients receive higher quality care. Passive patients do not. It is quite common to need to advocater to have your needs addressed. Unfortunately, many patients experience medical gaslighting when seeking care for MPN symptoms. Note that this is sometimes because the doctors do not know what to do to help someone with a MPN. That is why education and advocacy are so important.
My hematologist unfortunately was already one of the list as one of few expert in Australia , im try to get referred to another one of the list. My main point is learn as much as I can and bring ideas to hematologist or any other specialist , because what is happened in last 2 years , they are not listening my symptoms, they just look as the blood and say is everything ok see you next 6 months.
I’m basically pay everytime to just get same blood test and 2 minutes talk … how are you ? How is going ? ( useless question because the moment I said I’m not ok I have this symptoms) their answer is just here looks everything fine and see you again in 6 months .
in 2 years I had 4 identical appointments end up like that with 2 hematologist.
One neurologist excluded MS and said I don’t need anymore appointment.
The next neurologist atleast realised my left legs is weak then right side and I’m waiting for next appointment in March and see the results .
Here in Australia is not an easy journey, every door looks always close they treat me like is nothing there or it is what it is you need accept .
Sorry to hear about the challenges accessing effective medical care. Unfortunately, you are not alone in this experience. It is a fundamental truth that assertive patients receive higher quality care. Passive patients do not. We must be our own best advocates. We must be educated about MPNs to advocate for our care. While we have a right to high-quality care, we have a responsibility to ensure that it is delivered.
Suggest that in your next appointment, that you start with a conversation about treatment goals. Some doctors do not understand that there is more to MPN treatment than the numbers of blood cells. While prevention of thrombosis and hemorrhage are important short-term goals, managing the other symptoms and the long-term goal of preventing progression are equally important. Moreover, we know that merely managing the numbers of blood cells does not directly correlate with the goals we need to achieve.
I go to all appointments with a written agenda and provide a copy to the provider. The first item on all agendas is GOALS. I always ensure that all providers understand what goals I intend to achieve through treatment. I ensure that providers understand that all of my goals need to be addressed in all treatment decisions we make together. Shared decision making requires that we are working on the same goals. It is essential in the delivery of high-quality care.
Doctors who engage in medical gaslighting or who are unwilling to work with you to achieve your treatment goals should be replaced. Note that sometimes doctors do not know how to help you achieve your goals, even when your goals achievable. An ethical doctor will simply tell you when he/she does not know the answer to a question or how to help achieve a goal. This is when a referral to a more knowledgeable colleague is appropriate.
There is a reason that the tingling/numbness is occuring. This is a significant symptom that needs to be properly assessed and treated. EPguy provided an excellent battery of relevant tests that could be considered. Regarding the fatigue, there are a number of interventions that may help. You can consult the resources listed in the answer to our friend skakulec2.
"It also causes the overproduction of inflammatory cytokines. This is thought to be responsible for many of the secondary symptoms people with MPNs experience."
Which cytokines ?
Can we measure them and see if they are increased (overproduced) ?
If it is IL-6, or something else ..., that is increased, how can we be sure that it is the reason for the fatigue ? what can we do about it ?
There are quite a few inflammatory agents in the body, including the interleukins , which of both pro- and anti-inflammatory. TNF-a is one of the pro-inflammatory cytokines that has been investigated related to MPNs.
It is possible to measure for inflammatory agents; however, there is no single panel that would catch them all. Sometimes docs will check for inflammation markers, but this is not standard practice.
There are multiple reasons for fatigue in MPNs. Anemia, increased metabolic activity, cytokines/inflammation, sleep disturbance, medication side effects, and psychological factors all make the list for causes of fatigue. Bear in mind that there can be co-occurring reasons for fatigue that are not due to the MPN, such as nutritional deficiencies.
There are different interventions that can help with inflammation as well as with fatigue.
Inflammation - some on the forum have had success with a combination of interventions. I have used turmeric/curcumin with significant success. N-acetylcysteine is an options some have used with success. I also use L-glutathione (which is related to N-AC). There are a fair number of people on the forum, myself included, who follow an anti-inflammatory Mediterranean diet. The evidence on these interventions is mixed. It seems to work for some but not others. The good news on the Med-diet is that it is a healthy way to eat so there is no downside to trying. If you are interested in supplements, be sure to consult with a knowledgeable medical provider. I consult an Integrative Medicine doctor who has expertise in complementary health.
Fatigue - There are a number of interventions that may help. You can consult these resources.
This may not be related to your immediate problem, or there may be a connection, but you should be careful in using tumeric and capsicin while using aspirin. Along with the blood tests suggested by eGuy, it would be a good idea to have your coagulation factor tested. These herbal supplements are known to have interactions with aspirin. Do you notice any bruising, easy bleeding etc? It is wise to keep your GP and/or hematologist aware of all medication,supplements that you are taking. I hope you get much better answers to your symptoms and making healthy progress!
"Low-dose aspirin can safely prevent thrombotic complications in patients with polycythemia vera who have no contraindications to such treatment."
However it's not unusual to hear of members here doing both without apparent trouble esp curcumin for osteoarthritis pain. But caution on meds is wise as I know too well.
I take low dose aspiring and usually input come turmeric powder when I cook and I use often capsicum in my diet .
I get bruising very easily now , i the past I wasn’t get any bruising at all , around 10 years ago I got even a kick from a racehorse , a good kick in my leg, and I was bad muscle injury , a swollen muscle till I could even walk , the muscle just got bigger , and inflamed but didn’t get black at all, also I had few tiger accident I sjlukd had example a black eyes but nothing even that time .
While now everytime I just touch some corner , I got bruising very easily .
You may be experiencing these episodes due to decreased ability for blood to coagulate as it should. I would consult with hematologist to see if tests should be ordered. INR and Prothrombin time and PTT(Partial Thromboplastin Time) My MPN ordered these for me and I ended up having to take Vit K (prescription)for a few days. Do not take any supplement, such as K, without consulting with your doctor. Supplements such as tumeric, curcumin and capsicum can have interactions with aspirin. Better to have it checked out. good luck!
I am so sorry you are having those problems! And shame on them for not being nice or listening to you! I am a healthcare provider and I have been shocked at how much I had to be my own advocate and do my own research! But if I didn’t and just let the doctors handle who knows what I would be on! Even MD Anderson, and I was so nervous because I didn’t want to seem like I knew more because I don’t, but I was grateful because he listened. And EP guy is right! And if you bring this stuff to your doctor and they don’t listen then find someone else! EP guy has been through a lot with autoimmune symptoms so he is an awesome resource. And I know how you feel, I am 41, diagnosed at 38. Hard to still wrap my head around all of this. How I went from completely healthy just had a baby to cancer and MS in less than 3 years! But I get up and live my life. I will pray for pain relief for you. And like someone said to me, kick butt and take names! Don’t be afraid to ask questions and tell them what you think they should do. My doctors were grateful for the studies I brought them. Sign of a good doctor, taking help. We “practice” medicine. It is not an exact science. God gave us the tools to help and heal, but no one person is alike. Good luck! Always here if you just need to vent!
Thanks for your kindness your message give me a lot of hope , I’m actually mentally very strong , the problem at the end of the day I’m still in the hands of doctors, without their referral cannot make test , cannot meet specialist.
The worst part is I’m not scared or worried but I’m more tired of found doctor what doesn’t listen , arrogant doctors what when explain my symptoms and if bring some knowledge I learn online make me looks just more weak , someone with mental worrying , more knowledge I get and more I try to ask more they see me like someone what believe things have without have , basically they treat me like all the symptoms in just in my mind and that’s frustrating, keep changing doctors and always start from zero and waste again time and doing the same test and arrive at same conclusion is the worst part .
I hope my new doctor will be more humble and more interested in really take care of me .
I hope so too. As a health care provider I always try to humble myself and remind myself I don’t live in my patients shoes. That is what you need to find is someone who listens. And remember this is your life. I am not saying go in guns blazing, but it needs to be a relationship. I tease my patients when I know I will be seeing them often and say on their first visit “this is just our first date”! Relationships require communication from both sides. Don’t give up! Wish you luck with the next doctor. Hopefully they will listen.
I had been complaining to my doctor of pins and needles and intermittent burning in my foot for 2 years. After discovering I had E T and JAK2, I was referred to an MPN specialist who prescribed Clopidogrel 75mg (like baby aspirin) I have had no further episodes of pins and needles or burning since. I couldn’t believe that such a simple thing took away such awful pain that I had suffered for 2 years! I hope something gets done to heal your pain also.
I’m on low dose aspirin and since I started with aspirin many symptoms disappeared and I feel much better then worst days . By the way the symptom in the left leg of never disappeared.
I will try to ask at next appointment referral for your medication, hopefully I will get same results . Thanks a lot
I add around 1 litres extra hydration a day , basically probably my platelet was little bit higher because I wasn’t hydrated enough and blood was more concentrated.
2 years ago I was very weak , I was fainting , I was having extreme fatigue problems.
Probably because to improve my blood I removed all fat food, try to eat more healthy but I think I ended to remove all nutrients I needed , probably I was not having enough carbohydrates.
My haematologist advised my to drink protein shake . I end up to buy sustagen is a nestle product, have some protein and vitamin and drink everyday after wake up.
Since the day I add 800 ml skim milk with 2 spoon of sustagen , I become a normal person . I just got left with this numbness on the left side and tiredness too often in my legs, but before I was really bad, before I couldn’t go up from bed , always nausea and numbness all body.
I think the platelet got lowered as consequence of drink around 1 l’iter more fluid a day compare to before , eat more healthy and keep stay on movement. Before I had too much sedentary lifestyle , now I’m try to keep walk as much as I can . More I walk more I feel better , probably when I walk my blood flow improve .
The only things I changed from before to after is
Aspirin
Capsicum , chilie and turmeric in almost everyday diet
1 milks shake skim milk with 2 spoon of sustagen.
Walk 15.000-20.000 steps a day and try to not stay over 2-3 hours without moving, basically even when I’m in line and waiting or sit in a chair I keep doing steps .
One of those thing or all togheter lowered my platelet from 550 till 450, but my last blood test recently was even lower at 413.
I think my previous blood test was probably not much bone marrow problem but probably not enough hydration, I believe because of that I was able to lowered my platelet without any medication
I think probably before I was doing too much wrong things.
I was coming out from a very bad moment, broke up relationships in very bad way, and I was at same time dealing with permanent injury what costed my career. Basically during that time I wasn’t doing much probably for around 1 year and over I was almost 24 h a day in bed or sofa, not eat much , not eat well, and most importantly almost nothing drink at all, I was like in standby waiting to recovery from my work injury , insurance, my ex partner , my workplace all acted very unfairly to me . I was like in standby waiting to finally recovery and start new life , but that time during recovery was very hard time to handle, I end up literally waiting , not moving and not drinking almost nothing , was probably the worst thing I could do.
I believe my symptoms got higher after almost 2 years in that bad lifestyle, and after that we discovered the Jack 2. I always had some symptoms of thick blood , and I can guess my Jack 2 was already there from atleast 10 years before . But after that bad period of bad lifestyle I think the platelet got higher most of bad lifestyle and not much because of bone marrow production.
Because of that I believe my blood got on normal value again after fixing my lifestyle for 6 months -1 year .
Especially drink very less I think can make platelet high .
Example ,if we put 10 spoon of salt in 100 spoon of water , we will have 10% of salt , but if we put 10 spoon of salt in 50 spoon of water we gonna end up with double concentration of salt.
I believe the main reason my platelet comeback normal is because of activity and hydration. Not moving and be under hydrated, made my blood too much concentrate and I think as result as that blood test was showing higher platelet, simply because blood was concentrated.
Example , when I did bone marrow biopsy and I got bad reaction to anestesia, I was fainting and the hospital keep me there over night , I couldn’t eat I was vomiting easy , and I had drippers in my arm , the blood test result amid the next day after I got 2 package of drips, was showing my platelet lower then that current period.
That made me believe even I was trying my best to have good lifestyle I was probably not yet hydrated enough , since I start drinking milkshake what will make my everyday hydration of above 2 litres,the blood test after 6 months was very good and the one after 1 years since I start drinking above 2 litres , was simply perfect.
That’s why I’m quite sure the problem of my platelet was because of lack of hydration and that’s why got fixed by hydration.
In the end I didn’t go trough any major change in life , my everyday life is same , aspirin, drink above 2 litres , walk as much as I can and avoid rest for too long period, add capsicum , turmeric and chilly almost to my everyday diet .
I didn’t do anything else , didn’t take any other medication, basically everything got improved must be for a mix of this better lifestyle but probably the most benefit was from a lack of hydration to be fully hydrated what been a game changer in the platelet.
The sad things is all my symptoms are still here and still have no idea what’s is wrong with me and I just hope and pray is not something else nasty . In March I will have new appointment with new hematologist and appointment and result from my current neurologist and I hope with informations I got from here I will be bake to get checked further and referred to appropriate specialist
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