I’ve been a member of this community for a while, and I’m so grateful for the support and shared experiences here. I’m writing because I’m feeling incredibly frustrated and overwhelmed with my ongoing symptoms, a lack of answers, and the challenges I’ve faced in managing my diagnosis of Essential Thrombosis (ET).
I was diagnosed with ET six years ago after routine blood work revealed an elevated platelet count (450), and a subsequent bone marrow biopsy confirmed the JAK2 mutation. While my platelet count is now in the normal range (currently 300), I believe the problem lies not with the number of platelets but with their function. I suspect my platelets are damaging my veins, which could be causing many of my symptoms.
Symptoms I’m Struggling With:
1. Skin Issues: Painful, itchy, and burning rashes frequently appear on the upper parts of my arms (between the elbows and shoulders). These occur mostly in the evenings and sometimes in the mornings. My hematologist has dismissed them as eczema or pus and prescribed over-the-counter treatments, which haven’t helped at all in six years.
2. Tingling Sensations: I wake up every morning with tingling in my right fingertips, and it takes hours to subside.
3. Heel Fissures: I’ve developed deep, painful cracks in my heels that make walking very difficult.
4. Breathlessness, Anxiety, and High Blood Pressure: I often struggle with shortness of breath, extreme anxiety, and high blood pressure spikes.
The Bigger Picture:
In addition to ET, I’ve been dealing with a combination of sleep apnea, mild cognitive disorder, extreme anxiety, depression, and ADHD. These conditions are comorbid and, from my research, seem to be linked to ET or other microvascular issues like erythromelalgia. The stress from these overlapping conditions has been unbearable and, I believe, has made my symptoms, particularly the erythromelalgia, significantly worse.
I had to take a six-month medical leave from work due to these combined challenges. When I returned, I struggled to perform my job due to the cognitive and physical toll these conditions had taken on me, and I was ultimately fired. Since then, I’ve been fighting for long-term disability benefits from the third-party vendor that managed my medical leave. My claim was denied, and I’ve been battling this decision for over a year. The stress of this process has been overwhelming and feels like it’s killing me.
My Concerns About My Care:
My hematologist-oncologist, who I’ve been seeing for six years, has dismissed many of my symptoms and seems unfamiliar with ET’s secondary complications, like erythromelalgia. I even asked her directly about it, and she admitted she didn’t know much and suggested I see a specialist. I find this shocking, as I thought hematologist-oncologists were specialists in blood disorders like ET.
During my visits, she’s spent very little time addressing my concerns (often just telling me my counts look fine). After six years of this, I feel let down and desperate for answers.
Seeking Advice:
Has anyone experienced similar secondary symptoms with ET, such as rashes, tingling, or breathlessness? Have you dealt with comorbid conditions like cognitive issues, anxiety, or depression alongside ET? How have you found knowledgeable specialists or received support for long-term disability claims?
I feel like my symptoms and struggles are being dismissed, and I’m in so much pain without answers. Any advice, shared experiences, or recommendations would mean the world to me.
Thank you so much for taking the time to read this and for any guidance you can provide. This community has been such a lifeline for so many of us, and I’m deeply grateful for all of you.
Thank you!
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MPNs are rare disorders. Most doctors, including many hematologists, know little about them. They simply do not have the experience to fully understand the conditions. Your hematologists advice to see a MPN Specialist is good advice. You should do it to ensure you receive optimal care. Ideally, go to a MPN Center that is part of a larger hospital/research institution. This can really help when you need to see other specialists too. Here are two lists.
It is important o be confident in the answers your provider is giving. MPNs are complex disorders that can have a variety of secondary symptoms; however, we can have co-occurring medical issues not directly caused by the JAK2 mutation. Having said that, inflammation is a common theme in many conditions we experience. ET and eczema are both inflammation-related conditions. The body is an integrated system where one thing affects another. note that the overproduction of inflammatory cytokines cause by the JAK2 mutations can manifest in many different ways. Elevated cytokine levels can exacerbate symptoms like anxiety.
Controlling systemic inflammation can be an important part of managing a MPN. I consult with an integrative Medicine doctor for this reason. She had been very helpful in her more holistic approach and in the use of complementary health interventions that work. Having a provider who can blend conventional Western medicine with other interventions is very helpful.
It sounds like you need to see a dermatology as well as a MPN Specialist. My dermatologist prescribed Eucrisa for eczema flares. it works great, resolving flares in 2-3 days. Mst we focus on preventing the eczema flares chi involved preserving a healthy skin moisture barrier and avoiding know irritants.
The tingling you describe sound like a microvascular issue but could also be nerve related. Best to get an expert opinion on that. I have also eperinced that issue, which in my case was a PV-ralated issue. An appropriate dose of aspirin fixed the problem. note that "appropriate dose" is different for different people,
Please do follow up with a MPN Specialist for the best advice. You can add other specialists to your care team as needed. Regarding the disability insurance, that is a job for a disability lawyer to tackle. There are some agencies that may help as well. I was recently in touch with the folks at Triage Cancer, which would be a good resource to check into. triagecancer.org/
The MPN Forum list was complied by that organization. It lists patient-recommended MPN expert doctors. The PV Reporter list was complied by that organization. It contains a list of professionally vetted MPN expert doctors. Neither list is complete in covering all of the potential MPN Specialists in any country but they are the best we have.
If you are looking for a MPN Specialist, it helps to have a clear definition of what you mean. A MPN Specialist is something more than a hematologist who is willing to see a MPN patient. It needs to be a hematologist with an advanced level of experience and knowledge regarding MPNs. Definitions vary on what this means. This is the definition that I use.
1. Focus on MPNs as a primary/major focus of clinical practice.
a. Active member of a MPN Center/Clinic team
b. 100+ MPN Patients seen.
c. understands the management of secondary/constitutional MPN symptoms
2. Knowledgeable regarding underlying mechanisms involved in MPNs.
a. molecular pathogenesis, kinase pathways, proteomics, genetics.
3. Up to date on current and emerging MPN Treatments
a. Extensive experience with managing Interferons, JAK inhibitors, and other MPN treatment options.
b. Knowledgeable about clinical trials and MPN treatments in development.
6. Values a collaborative relationship with patients. Respects the patient’s ability and right to make decisions. Actively engages in shared decision making
It is is very difficult to find a MPN Specialist who meets all these criteria. It is often necessary to compromise on some of the criteria. We each need to define what our priorities are in selecting a MPN provider. We have both a right and a responsibility to decide who our providers will be. We need to make good decisions and advocate for access to the providers of our choosing.
Thanks again Hunter. In my hospital there seems to be a multi disciplinary team, so that makes me feel safe. It was frustrating having a different doctor entire I went, but now, after a year, I have 2 that will be my main doctors. I love the description of a specialist but it must be extremely hard to find someone with that amount of expertise. Here in Spain, with a population 48k, there are less than 2,000 people with Mylofibrosis.Anyway, I finally feel safe so I suppose that's a good thing.
This will be a lot of info on helping the body find its balance. First immediate thoughts on what you wrote.
Which meds are you on? I don’t stay in normal range, but at 600-700. If I go try to go lower, I can’t handle my treatment and quality of life is paramount!!! For MPNers. As long as the aspirin is there(I alternate with 120mg am and pm with natural ginkgo).
HU caused me terrible neurological symptoms. Amagrelid does a job on my heart, skin, liver. I therefore take supplements to counteract the symptoms.
All meds do damage! deplete vit and minerals. Just ask the internet. Please look for serious websites and cross check. Take notes.
The vein problems sound like what the Covid Pfizer vaccine did to me. Including cognitive decline! An alternative doctor who uses the quint system to test the frequencies of meds, viruses, foods, in the body. He found that the vaccine was creating havoc and treatment by treatment he was able to get rid of the spike protein and I slowly regained my strength, veins and brain health. A really good collagen powder did s great job on my veins. I went from support stockings 140 pressure down to 70!! In a year. My heart health is also better.
I also took Besremi for 1.5 years great at the beginning, but eventually I had crippling pain in hands feet neck! Went back on anagrelide at very low dosage the platelets are crawling up, but ever so slowly! I’m ok
Below my notes on general health and auto immune system.
There are 100 ways to improve the microbiom and probiotics is only a small pet of the puzzle. Please find a really good functional doctor to get you going on this. You have to start immediately to modulate your immune system. Theres not much time till you transplant.
How I did it:
Omega 3 Fish oil from Norsan !! which is in liquid form (not capsules, which often contain rancid oil. 1 tbsp am and pm
Probiotics as follows. Most probiotics are dead and are useless. Invest in Live bacteria cultures, put amount suggested in a glass water, let sit for 10-20 min to mactivate and multiply, then drink fat on an empty stomach and chase with water to make sure it gets past the stomach acid asap. am and pm. Wait min. 20 minutes before eating. Doing all this will get rid of bad bacteria that crowding out the goos.
Zero grains except some rice 2x week
No sugar, milk products, night shade vegetables
Leave out everythig that causes intolerances
Yes:
As much organic food as possible, no chemicals in the house or on or in your body. They are everywhere! Reduce even the tiniest assault to the immune system, so that the immune system can concentrate on the most important things.
Lots of veggies , boiled or suateed, but cooked well to lighten up digestion. organic, fish, meat, poultry, no pork which shoots off the immune system.
Lots of good fats to give you energy. this will help your body learn to burn fats for energy. after about a month you will never fell hungry again. really good organic olive oil, grass fed organic butter, Flax seed oil instead of fish oil. Fats are turned into a better form of sugar called ketones for energy, which are also SUPER for the brain ! Real brain food
Do take L-glutamin to help heal the gut and improve digestion.
Take 40-60,000 IUs of Vitamin D weekly. But check the blood rate first. Optimal is 60-80. anything under 50 is a deficite.
Stinging nettle tea, with 60-70C water and let sit for an hour or overnight before drinking. Bring a great ph balance in the body.
take a super form of natural magnesium that contains many different kinds of magnesium
eat 1-2 Brazilian nuts a day (full of selenium!)
eat lots of goos nuts and seeds (no cashews or peanuts)
If lentils and pulses, please, them must first be sprouted then cooked!! water rinsed many times during process and then rinsed and cooked.
Garlic is great (raw chopped or crushed and let do gain analin power for 10"). Eat at least 10 leaves of fresh parsley to kill the odor.
I never thought I would write this much. It's a lot to take in but please start somewhere in order to increase your chances of your tolerance after the procedure.
almost not built in a day anything you can do from this list is a step in the right direction. It took me months to get used to the system and about a year and a half to really go organic and get rid of all chemicals out of my house. d my whole family has had a new lease on life young and old, since doing the switchover.
the diet is called the autoimmune Paleo diet, and it is necessary to tweak it for your own needs. Every single body is different and will react differently to different foods. d leave out anything you know you have an intolerance to or are you suspect. try to stay away from alcohol as much as possible better to not drink any at all. if so, only organic.
I wish you all the luck in the world as you made this very courageous decision! please ask your doctor MPN specialist or Haematologist about interferons and especially Besremi. After some years on that, many I've gone to remission for two or three years. please look into that!
When taking supplements, always have blood tests in between to find where your levels are at!!
now back to my notes to (number)
Most Hematologists know very little about our bodies. A handful have taken time to learn more than the basics regarding MPNs and many are utterly unacceptable the less they know the more they demean or dismiss you. shame on them.
I wish you courage! Study, learn about your body Be prepared for your appointments. Advocate for yourself! 😘 there are answers!
a lot of what you’ve mentioned could also be related to vitamin/ mineral deficiencies. Have you ever had a blood test to look at your levels? In addition, being in range is not necessarily the same as being optimal for good health . I would recommend you get this done. If you prefer, you can do it your self at home with finger prick blood tests which aren’t too expensive. I think a good number of folks have discovered deficiencies and found benefits when correcting them. On my diagnosis I was also deficient in vits D and B12. Thyroid not optimal either. Basically I’ve had to sort all this out myself as Drs are completely clueless ( and therefore dangerous in my opinion ) They have their uses but not when it comes to diet and nutrition. You will have to do your own research.
What is your diet like?
What medication do you take? What other medical interventions have you had ?
If you have erythromyalgia, aspirin is supposed to help control the symptoms.
For itchy skin, the most useful thing I’ve found is CBD oil used topically.
Happy to point you in the direction of great books if you wonder if your issues could be diet/ deficiency related.
Start to take control of your own health. No one else will do it for you.
Hi . I am.so.sorry this is making you feel like this. I must say you are not alone. I am currently writing this and my feet are on fire. I said to my daughter yesterday I feel like I have been standing in hot sand for weeks and I am just having to get used to it as nothing can be done. I also as you can probably tell from that symptom have erythromelalgia and E.T . I was like yourself so down and fed up with everything. My pains in my hand , feet were so bad. I have also recently noticed I get an icy cold cheek and left forearm. I had a rash develop all over me and my lips started to swell. I ended up in hospital and they could only say it was an allergic reaction. I hadn't ate or drank anything as I was feeling unwell . I started the rash a few weeks after that and again went to see them and they had no idea what was happening. They think it was my body reacting to an infection I had. So basically I was allergic to my infection. This is when they mentioned erythromelalgia as I had also said my feet were constantly burning and my hands were starting to get red and itchy and I had flare ups. I like yourself got really depressed and I started to see a therapist as I said basically can a lass not get a break. It appears that every week I wake up feeling ok I try to catch up with things that I haven't been able to do and then I am in bed for days. I am.also fed up with it . I know this long winded response is not what you wanted but I just wanted to let you know you are not alone. Take care x
I too would definitely recommend that you consult an MPN specialist. I am waiting to do this as the hospital who treat me for my ET are understaffed, overworked and don't appear to have in-depth knowledge about MPNs.
I would also say that, l like you, my platelets weren't very high. 450 sounds low in the scheme of things. With a rare blood disorder it's very easy to believe that every little symptom you experience is linked to it. From my own experience this is defintiely not the case, particularly if your platelets weren't extremely high.
Mine started at just over the 500 and the hydroxybcarbamide has brought them down to the 200s. This has taken about 8 months. However, after about 4 months of treatment a few symptoms improved but the majority of mine didn't. I was suffering very badly with tingling feet, dry eyes, fatigue, lethargy, depression, stomach issues and more. After reading a post on this forum I started researching Vitamin B12 deficiency and found two important factors. One is that HU can mask the symptoms of Vitamin B12 deficiency and Lansaprazole (a medication I was taking to counteract any unwanted aspirin effects) can prevent the body absorbing B12. In fact there are quite a few medications that prevent the body absorbing this vital vitamin. After mentioning this to my GP he immediately gave me a B12 injection and this was life changing and not only that it worked extremely quickly. I've had three now and am currently having more in-depth tests for this.
It's also worth noting that B12 blood tests are notoriously unreliable and if your test result is at the low end of the scale it may fall into the 'normal' range' but this is a very grey area. Mine was shown as normal but clearly wasn't.
This may not be relevant to your case but I hope it may be helpful. If someone had told me a year ago that nost of my problems could be due to a vitamin deficiency I would have been very sceptical as my diet is very good but there you are. Check it out.
sorry to read about your issues. I also have ET Jak2. diagnosed in 2019. you don't mention your medication. Are you on HU. your symptoms are common and I find there is very little advice from hemo.
I have et. It took me about 6 yrs to cope with the fatigue breathlessness and I will call low mood.
To me they are all linked
My breathlessness is a warning sign that I’m going to get fatigued if I don’t rest. The low mood/stress comes with issues that have cropped up and I’m afraid I won’t be able to cope because I am breathless and I need to rest before fatigue puts me to bed.
I have dry skin, I know fissures are extremely painful my mum had those. So I use oil on the heels to moisturize.
Last week I had a Cerebral (brain) angiogram as two of the blood vessels in my brain had narrowed. The Neurologist said they think this is cause by years of ET - so the high platelets do have an effect, as does all of the medication. This disease has so many secondary effects that, in my case anyway, it is a matter of balancing the multiple medications and ensuring you have different specialists looking closely at each area of your body. I currently have a Haematologist, a Neurologist, a Cardiologist, and a Dermatologist and just as important - an Excercise Physiologist.
I have had tingling and numbness in my big toes for years, my Neurologist monitors this. I assume you have seen a Neurologist?
Rare and complex diseases are challenging and time consuming to manage, we all suffer because of this. Let’s not even mention the fatigue!
So sorry to read what you’re experiencing. I have ET JAK2 + also, which was diagnosed in 2018 a month before breast cancer was found. I had a small lump removed and radiotherapy and have been checked annually since. I’ve been on Hydroxycarbamide 500 mg daily since, with a couple of small breaks at my request but platelets began to rise again quite quickly to 600. Highest I’ve been is 800. I also get tingling and numbness in my feet when in bed and I also have breathlessness when walking and anxiety. I recently requested a blood test at GP’s as they never seem to look at our vitamins and they have discovered I’m very low on Vitamin D. I’ve been put on large dose pill once a week for 6 weeks then to take daily doses for I don’t know how long. So I’m glad Idid ask for this. My Haematologist rings me every 2 months or so to discuss blood results .I have a full blood count at GP’s a few days before. I was advised to stop Hydroxy when I had bad Covid in middle of last year and since going back on it my platelets are taking time to come back to normal. They’re currently around 400 whereas before they were in the 300’s sometimes 200’s. I also suffer daily with abdominal pains. Not sure if this is IBS or Diverticulosis which I do have or if the ET causes this inflammation. I agree with so many here, doctors do not know much about MPN’s . I think Hunter’s advice to seek an MPN Haematology Specialist would be the right way to go. Good luck.
Here’s a revised version of your message to make it more polished and empathetic:
Thank you so much for your response. It’s incredibly challenging to find a specialist who truly understands essential thrombosis (ET) and all the secondary elements that come with it. I live in Los Angeles and have been searching for a recommendation for a knowledgeable doctor in my area. Do you think there might be someone here you’d recommend?
It’s been such a frustrating journey. My platelet count is low—only 300—and while doctors often dismiss my concerns, saying my platelets are “perfect” and I look healthy, I’m genuinely struggling. Sometimes I feel like they think I’m imagining or exaggerating my symptoms, which is so disheartening. I’ve even asked about conditions like erythromelalgia, but many doctors seem unfamiliar with it.
I feel so fortunate to have found this group because it reminds me I’m not alone. If you know of a specialist who truly understands ET—even if they aren’t in Los Angeles—I’d be willing to travel anywhere in the world for the right care. I’ve gone through the list of specialists I’ve been given so far, but unfortunately, I haven’t had much luck.
Thank you again for taking the time to connect with me. It means a lot.
You might try MD Anderson in Houston. I live in Alabama and travel to Houston every year for 4 years. My hematologist here in Alabama knows nothing. They do see me every 3 months and do bloodwork. MDA thinks I may be progressing from ET to PV so I get a phlebotomy here in Alabama when my hematocrit is 45 or above every 3 months. I highly recommend MD Anderson. They stay in touch with my doctor who is quarterbacking my care due to heart issues, stomach issues, skin issues, and kidney issues. Best of luck! You are not alone!
I am an ET patient diagnosed 2 years ago. I am a oerformance dancer and after being on hydroxymide tablets for a month I felt like a woman of 90 mobility wise. Told my consultant that I have, joint, bone and muscle aches…. He said that I am of a certain age 69 to be precise and advisethat I should be tested for arthritis with my GP…. Had tests done and results were… no arthritis and no inflammation which leaves me to believe that I am having side effects from the chemo tablets….. which my consultant never heard of
good evening . I empathise totally I am also trying to get recognition from multiple doctors that these symptoms are connected . From a positive point of view my brain fog visual changes hot peeling feet and pins and needles in hands did improve with Clopidigrel.
Though Hydroxycarbamide controls my platelets side effects fatigue etc is debilitating.
Anti phospholipid which was diagnosed at the same time as ET is largely ignored . I also have Sjögren syndrome and for many years that was largely dismissed. I don’t want to just list my problems but I do want to say I understand .Your concerns .
I do not understand why when specialists in MPN confirm these are symptoms their consultant colleagues do not accept their expertise and acknowledge this . It would save a lot of what seems like futile discussions . We are not going mad and at least we do have the support of fellow sufferers. L
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