ET mental impact/symptoms

Hello to all. I am a 49y.o. male, diagnosed with ET (JAK2+) about a month ago (January 2021). Platellets have been relatively stable over 450k (460k-503k) for at least 7yrs now, but otherwise healthy, fit, calm and not taking any medication, so my GP never said that this could be an indication of something serious.

Following a intense period at work last year, I started feeling somehow fatigued over last summer and had annoying lower back pain for a few months (both of which I thought were a result of my lifestyle and that they would go away after the summer holidays). They didn't.

In September, came abdominal discomfort and mild indigestion, followed by insomnia, night sweats and increased heartbeat. Visited my GP 5 times, he said it was stress, had all sorts of blood tests (HIV/Lyme/Toxoplasm/Cancer markers), coming back normal with the exception of platellets (528k-623k). The GE found a mild gastritis (said caused by the NSAIDS I was taking for my back pain), Cardiologist said all ok with my heart but unexplained rapid heartbeat had to be dealt with a beta blocker.

Needless to say that although abdominal symptoms initially subsided and hearbeat normalised (the beta blocker), my overall condition was not improving and from mid-October onwards, I started having tremendous anxiety for the first time in my life. I went to the ER twice, once with severe abdominal pain but the CT scan was clear, one with increased blood pressure (16/10) and heartbeat (150). Both times they told me I was simply stressed.

Early November, I started having weight loss, skin rashes, problems in concentration, blurred vision, severely impacting my life and work performance. GP suggested I see a psychiatrist cause this thing was turning into an depression/anxiety disorder. I did and he suggested antidepressants and benzos.

Refused to take them then cause I believed my symptoms were 100% real, so I continued living with my symptoms for another few weeks, till I fainted at some point mid-December (to me it seemed like a stroke but this was never confirmed by the neurologist). In the hospital, they run some initial tests and kept me in the hematology/oncology ward for 2 weeks. Had all kinds of tests (3 CT scans, 2 MRIs, electro-myograms, electro-encephalograms, numerous blood tests and a bone marrow biopsy). Concluded the only problem was the JAK2+ and platellet count and got an official ET diagnosis. Hematologist (head of the department and one of the very few in the area) said my symptoms are not related to my ET as I was considered low risk and my count was at 520k at the time. Said for now, I can live a long problem-free life on Aspirin alone as the only thing I can get from my ET is some tingling in my feet and suggested Hydrea if in my next control my platellets exceed 800k-1m. He also said that psychiatric support (sertraline and diazepam) were essential part of the therapy for the 6months-1yr going forward as stress could aggravate my condition.

A month later most old symptoms subsided, only to be replaced by a slight tingling in my feet when I am sitting long hours, occasional night sweats and leg muscle spasms just before I fall asleep (luckily I sleep a good 8hrs now without medication). With proper sleep and by regaining 2/3 of my lost weight, I now look normal and it is even harder to convince anyone that I still feel weird.

Nevertheless, it appears that a small dose of benzodiazepine and medium dose of sertraline are essential for me to function during the day. If I skip my (very small) benzo dose, my leg trembling, blurry vision, inability to concentrate, nervousness, all come back.

I would sincerelly appreciate it if someone in the "real world" of ET can tell me if above symptoms could relate to ET, or are more impact of uncertainty/fear of the unknown. At this point I cannot understand if this how my life is going to be (and possibly worse) if this is all related to ET, or whether the sertraline/benzo/beta blocker combo could at some point be stopped, if I manage to cope with my anxiety and only have to deal with ET.

Apologies for the lengthy post and thanking you in advance!

[hunter5582]

The best thing to do at this point is to consult with a MPN Specialist who can better advise you regarding ET and the implications of the JAK2 mutation. Most docs, even hematologists, do not have the KSAs to provide optimal treatment for MPNs. Here is a link to docs with that expertise. mpnforum.com/list-hem./ .

Some of what you are reporting is likely linked to the JAK2 mutation. MPNs are at the core inflammatory disorder. Deregulation of the JAK-STAT pathway does more than drive up hematopoiesis. It also causes your body to make too many inflammatory cytokines. This is thought to be responsible for many of the secondary symptoms we experience. Note that even conditions that are not "related" the MPN can be exacerbated by what the JAK2 mutation does to your body. Systemic inflammation can have very significant impact. The inflammatory conditions I experience include: GERD, osteoarthritis, plantar fascitis, eczema, insomnia. Constitutional symptoms like paresthesia, fatigue, and insomnia are quite common with MPNs. It is all part of the disorder. It can be really tricky to figure out what is and what is not related to the MPN.

The tachycardia you reported may be completely separate. Tachycardia can result from anxiety, fear, and pain. It can also be the result of an arrhythmia - a defect in the electrical system in your heart. Beta blockers are used to treat tachycardia. I am not sure why the doc would recommend one unless you were diagnosed with an arrhythmia. There may not be an damage to your heart (muscle and plumbing) but what did the doc say about the electro-physiology aspect of your heart (the wiring)? There are different types of tachycardia. Do you know which one you have? Note: i learned all about this when I experienced paroxysmal atrial tachycardia. I could not tolerate beta blockers nor calcium channel blockers, therefor opted for surgery (catheter ablation) -which was successful.

Regarding the anxiety, it certainly does need treatment. It is extremely harmful to both your mind and body. You may want to learn more about the concept of the "Gut Brain." Short version = the gut is connected to the brain via the vagus nerve and biochemically via catecholamine-cortisol-cytokines. Inflammation in the gut sends signals to the brain that cause anxiety-depression-insomnia. When you are anxious-depressed the brain sends signals to the gut the produce inflammation (and extra acid). It can turn into a viscous cycle. It is critical to break the cycle in order to heal. NOTE: those pesky cytokines showed up again. NOTE: I did learn all that the hard way - from personal experience with it.

Your body is an integrated system. All parts are connected. Even "unrelated" disorders can have impact on each other. It is very important to treat your body as a system and deal with all of its parts in a holistic fashion. What you are reporting is consistent with someone who has a JAK2/ET along with some additional "unrelated" medical conditions. there are lots of us on the forum in the same situation. The good news is that there are things you can do to make things better.

1. Consult with a MPN Specialist

2. Consult with an Anxiety Disorders specialist who uses evidence-based practices like Cognitive Behavior Therapy

3. Consult with an Integrative/Functional Medicine specialist who can work with you to better manage your issues holistically. (If you can find one).

4. Learn basic mindfulness techniques to help with the anxiety. I use Qi Gong.

5. Intervene to control systemic inflammation. I use a combination of diet, exercise, and certain supplements: Curcumin, L-Glutathione, and SPM Active. If you choose to use supplements (they really can help) - be sure to consult with a knowledgeable provider as they can and do interact with other meds (see #3).

This is really just the tip of the iceberg in answering your questions and finding solutions to what you are facing. Know that there is great hope for finding these solutions and you absolutely can get yourself into a better place.

[Hidden in reply to hunter5582]

Thank you for this precious feedback and the time you took to reply.

I am aware that the closest (one and only I am afraid) MPN specialist to where I live, is a 7 hour drive away. The hematologist I am seeing is actually one of the two specialists in the area who knows at least what an MPN is, hence I was referred to him after a few months of searching and agony. From what I read though, it appears that even specialists are split with contradicting views.

Assuming Dr. Spivak (for example) is right in that our disease is 50% aquired (through the JAK2 mutation) but symptoms/progression/clinical manifestation depend on each individual's genome, I cannot see (with my limited experience) how we can foresee what's coming. Unfortunately, my main conclusion is that now my life expectancy might be near-normal at best and my quality of life can only get worse. This certainly does not help at a mental level.

As this is pretty recent for me (I was feeling better than ever until early summer 2020), all I can conclude is that something has trigerred a progression in my MPN. To me it coincided with a viral (HSV-1 infection) with typical symptoms which this time around, never got away even after the "sore" healed. I am sure that the tour around different doctors made me fear the worse and made my mental health go downhill.

My tachycardia was a "sinus" tachycardia. All other cardio tests showed no functional abnormalities and no atheromatosis. Treatment was proposed on my cardiologist's assumption that my heart needs to be protected until we find out what causes it and the assumption so far, is that I am in a state of anxiety. Even with my ET diagnosis, nobody seems to be looking at anything else besides thrombotic risk.

What seems odd, is that anxiety, fear, uncertainty and inability to concentrate, were the main symptoms even before the diagnosis. Nevertheless, they are reduced with the antidepressant/benodiazepine, which makes the "anxiety" diagnosis more plausible, especially since I started being more "normal" in my professional and family life.

It's a kind of "chicken & egg" situation. If ET can cause this, then this feeds anxiety and so treatment will have to be continuous. If anxiety is related to the unknown prior (and following) diagnosis, it might subside with the help of the medication/therapy and once I can "digest" and eventually accept what has happened to me.

By trying to draw a line between what can be caused by ET (which will possibly get worse) and what is the result of my mental state (which I am treating), I am trying to hope for something better going forward. As I said, it is all too recent for me

[hunter5582 in reply to Hidden]

There is actually genetic testing that can look for the presence of non-driver mutations that impact the course of the MPN. There are various MPN Myeloid Panels that use Next Generation Sequencing. I recently had the Intelligen MPN Myeloid Panel done. files.labcorp.com/labcorp-d... .

This particular panel also includes checking for the mutant allele burden, which is another important element of understanding the status of your MPN.

FYI - my results were that there has been very little progression in my JAK2 mutant allele burden. I did show as positive for the NF1:c5425C>T mutation. I was already aware of this as I am also diagnosed with Neurofibromatosis Type 1. I have the germline mutation rather than the somatic mutation that some with MPNs have. The NF1 mutation increases the chances that my PV will progress to AML. Knowing this helps inform my decisions about my treatment. My current JAK2 MAB = 26% and I have a relatively indolent presentation of PV. With my MAB progressing so slowly (was 25% a year before) I am able to better make informed choices.

Do know that ET can come with a complex array of symptoms that are not always clearly related in the eyes of providers, but in fact are related. The JAK-STAT pathway is a kinase system that has very significant impact on the body. MPN Specialists are much more aware of just how wide ranging the impact of MPNs can be. Even with the MPN being 7 hours away, I would suggest consulting anyway. The way I handle this is to meet annually with the MPN Specialist. I can also meet with him via tele-video sessions. He is wonderful about answering questions via messages in the patient portal. The MPN Specialist consults with me and my local hematologist about my care plan. My local hematologist (who is a wonderful doc, but not a MPN expert) is fine with this arrangement.

That cycle where anxiety feeds inflammation and inflammation feeds anxiety is both real and devastating. Back in 2013 I got caught up in that cycle, culminating in gastritis, gastroparesis/blockage and a whole lot of anxiety. At the time, I did not deal well with it even though I knew better. Learning more about the "gut brain" helped me figure out what was going on. I decided it did not matter what came first. I had to deal with both the chicken and the egg. I also decided "never again." I would never let myself spiral the way I did then. This became absolutely vital when I had to have both a heart and brain surgery in the course of one year.

Since you are dealing with the recent diagnosis of ET, do let me share the following. I was diagnosed with ET about 30 years ago. It progressed to PV about 7 years ago. Now at age 65, I have lead a rich life and continue to do so. There have been some challenges, some MPN related and some not, but I have managed these challenges. You can do the same. Plan for a long rich life in which you will face some very real challenges that you will be able to overcome.

All the best to you on this journey.

[Jennytheb]

Hi, so sorry you have had this road to the diagnosis.This is an excellent site and see hunter has replied to you with some very useful info (as usual). Hope you now have an understanding hematologist who will be the most help to you. I find mine and his office really understanding and helpful so hope you can too now.We are mostly all in the same boat here one way or another so keep logging in and hopefully you will feel better now you have a logical diagnosis. Take care.

Jenny

[Hidden in reply to Jennytheb]

Thank you so much. The hematologist I have, is at least someone who guessed what could be wrong with me in the first place. He accepted me in the hospital (which is not standard procedure where I live) to have all tests in a controlled environment, keeps my GP and cardiologist informed and gave me his personal emai so that I can contact him directly in case I need to talk to him.

Having said that, I was only told that all I can expect is some tingling (pins&needles) in my feet and hands (rarely). In his view, my fainting, neurological/cognitive symptoms were not linked to any pathological condition (I had all kinds of tests). He said he's not concerned about my diagnosis at this stage but he's especially concerned about the state of generalised anxiety in which it became known. Hence his suggestion to treat that first with a psychiatrist (short-term treatment is what he proposed).

Having a "caring" doctor who thinks that 160mg of aspirin can take care of everything, is in line with the protocol. At the same time it makes me hesitant to "bother" him regularly with anything that I feel, which might (or not) be related to my condition. The psychiatrist on the other hand believes my condition is a combined state of depression/anxiety, for which a more long-term treatment is needed. His view is that I am doing so well that my sessions are decreased to 20mins, barely enough to prescribe the medication. So if I belive my doctors, colleagues at work , friends and family, I am in such a fine state that I should just live normally.

I had such a terrible time with doctors and hospitals in the last 4 months, that I'd rather not see one again soon. I am trying to sort things in my mind before I hit another wall (in which case I will be contacting him/them) again. In any case I have blood controls scheduled in 2 and 5 months from now, which will make the contact inevitable.

I am lucky to have a medical professional in the family with whom I talk regularly. Not a specialist by any means but the only person willing to listen enough to direct me and ease some fears.

That is why I feel happy to be part of this community. Feeling less lonely always helps.

[Jennytheb in reply to Hidden]

Hi, glad you are on the right track now Esson, onward and upward as they say, take care.

[Bridie123]

Hi, I am a 60yr old female, though I was in my 50s when diagnosed and obvious with hindsight ,have had ET for some years. It was symptoms similar to yours that led to my diagnosis of ET calr. So I am not convinced that the jak2 mutation is the more serious one and I Seriously do Not believe that the symptoms have nothing to do with the disease .

Hope you are keeping well otherwise and don't stop believing what you know.

[Tico in reply to Bridie123]

If only some Haematologists had a real insight of the symptom burden someone with an Mpn can present with and especially before diagnosis and treatment commences. Some Haematologists refuse to believe the symptoms are in anyway associated with with Et, but time and time again your hear of patients describing the same problems with vision, tingling and numbness in the extremities and cognitive problems to name but a few ( all of which I experienced) and unfortunately it is only after a major event occurs, ie, a stroke, heart attack or a blood clot elsewhere that the problem and diagnosis is made of an Mpn.The Haematologists must think we all have psycological issues when we mention symptoms, probably because they have asymtomatic patients too. Tina.🤗

[Hidden in reply to Bridie123]

Thank you Bridie.Quite frankly, I do not know what to believe. I had higher than normal platellets for at least 7 years prior to diagnosis. I was at 503k in 2017 but never thought about it (in fact I was eating a healthy diet, exercised 4 times a week, had quit smoking for over a year) and my GP said this was a temporary spike and nothing to worry about. I had pretty much the same level a month and a half ago (just prior to my diagnosis), but felt terrible, particularly mentally. Biopsy showed JAK2+ but nothing else. Athough seeminly nothing has changed, everything feels worse.

Scientists seem to accept now that a JAK2 mutation is worse than MPL/CALR (hence more prevalent in PV/MF) and linked to progression/thrombotic events. Then, you read thrombotic events are not linked to platellet levels but you have most treated with HU (which some say is toxic and dangerous) . Others scientists seem to believe it is the number of random mutations and their sequence lead to progression/symptoms. So it can be nothing or everything in MPNs..not very comforting I guess.

[Cja1956]

I was diagnosed with ET Jak 2 in 2008 at age 52, so I’ve had some experience with this disease. My platelets were only around 600, but my hematologist put me on Hydrea anyway. My symptoms at the time were bad headaches,fatigue, and brain fog. I also developed shortness of breath and heart palpitations, so I went to see a cardiologist, and he said everything was fine. When my platelets became normalized, I naively stopped my medication and ended up in the emergency room with a blood clot in my spleen. I thought I was having a heart attack, the pain was so bad. They kept me for 3 days. Over the years, I developed several bladder and kidney infections where i ended up in the ER. In 2017, I developed anemia and my platelets were in the 700’s, and my hematologist couldn’t get my numbers under control. I eventually found this site and changed to an mpn specialist. She did a BMB, ultrasound, and tons of bloodwork, and said I had progressed to post ET M F, intermediate 1. So, to sum it up, you can live a long time with ET, but our quality of life is what we make it. There will be challenges along the way, but I still work (albeit, part-time) and try to make the most of every day. This site has helped me tremendously with their knowledge and support. Please keep us up to date on how you’re doing on your mpn journey.

[Tico in reply to Cja1956]

I 've had a similar journey to you Cindy abeit I haven't progressed to MF. I was diagnosed in 2008 and Haematologists have never been able to stablize my counts for an extended period of time. I also remember the heart palpitations and went to A & E and was told nothing was wrong before having first stroke a couple of months later. In the last year i've been struggling to maintain my Iron levels but refuse to take anymore medication, instead trying to incorporate more Iron in my diet. Its what you say, their can be challenges along the way and you have to make the most of every day. Tina.🤗

[hunter5582 in reply to Tico]

Don't blame you for not wanting to take more meds. When I was over-phlebotomized I ended up with HCT - 32 and I have PV. The doc put me on iron supplements. Yuck! After a couple of weeks I decided to just eat more iron and let my body recover on its own. Not the right choice for everyone, but it worked for me. Lots of oysters and clams (yum) and a bit bit more red meat than is my norm. Much of the red meat was venison, which is way better for you than beef. Had to lay off the tuna though. My mercury levels were way too high! 😡Too bad - I love tuna.

Definitely agree about making the most out of every day. I hope you have a wonderful one. Now I have to go out and shovel snow again. 9 inches last week and another 3-4 today. On the bright side - it is really pretty!

[mhos61 in reply to hunter5582]

Be lovely if you could upload a pic! (Of the snow that is).

[Tico in reply to mhos61]

I'm glad you said the snow Mary, I was beginning to wonder if i'd clicked on a different site by accident!🤣🤣🤣 Tina.🤗

[Cja1956 in reply to Tico]

Yes, very similar except that my iron levels were normal. My anemia was caused by my drop in hemoglobin levels. Diet is definitely important. I feel like if I eat a lot of carbs and sugar, my stomach really hurts, so I’ve cut down tremendously. Hope you’re doing well.

Cindy

[Tico in reply to Cja1956]

Ditto. Tina.🤗

[Minu68 in reply to Cja1956]

Ditto! Minu x

[Hidden in reply to Cja1956]

Thank you for taking time to reply.

I have been reading a lot about brain fog but never quite understood what it means for each individual. What I started having prior to my diagnosis was actually a feeling that I am watching my life through a window. That I have to think of what to do or say before I do it, as if it is not me but someone else whose movements I had to co-ordinate. This remains the most challenging part in my life. It is worse in the morning and late afternoon for me.

Initially, I was unable to sit on a chair for more than 5 minutes, read a book or any text on a screen. Even when things were not blurry, they did not seem to make any sense. It is then my problems at work started and as my work is both demanding and essential for my survival, this sense started a vicious circle of more fear, anxiety and even panic attacks, for the first time in my life. This was interpreted as anxiety/depression disorder. Although I did not accept it immediately (and possibly I am still in denial), after 8 weeks on sertraline/benzodiasepines, I can at least participate in this forum, drive to work and perform as expected. I watch movies again and play with my children, which is a good thing. I am doing 90% of the things I was doing before, but it just doesn't feel the same.

The thought that this is linked to ET and possibly its progression, is what scares me most. When I am getting the numbness in my feet, or the occasional headache, normally frontal, around the ears or the sinuses (which could be irrelevant), a random pain in my back, then I feel it can all start again. Needless to say, my doctors still think it is all mental.

[CalrType1]

Hi Esson. I was diagnosed with ET in 2018, CALR-Type1. It took 5 years of escalating symptoms before I received my diagnosis. Depression was thrown at me too as an explanation, and I was essentially told it was in my head. I fought them and scolded them after my diagnosis of ET for how they treated me. I received a second opinion after the diagnosis. I told the doctor “I feel like crap all the time “ and he replied “well yea!” Many folks with ET are symptom free. Then there are us, the 5-20% who are effected with multiple symptoms. Beginning in 2018 I take baby aspirin with Hydroxyurea. I’m 62 now. Platelets were 550 down to 350 and now rising to 500 again. I’ll need my meds increased. Aspirin and Hydroxyurea do not and have never helped symptoms, made them worse most likely. I take Tranadol to get through my day. I’m not a doctor, just a ET victim. Do what you need to do to live each day the best you can. Live is precious and we need to remember that. Good luck! Jim

[Tico in reply to CalrType1]

Hi Jim. I really do sympathise, I think quite a lot of us had the same as you in the beginning at the onset of symptoms when we'd been told it was all in "our heads". I was lucky, Aspirin and Hydrea did lesson my symptoms but still didn't stop me having another stroke 7 years later and platelets have never been totally stablised. Now on Clopidogrel and Hydrea. Tina.🤗

[CalrType1 in reply to Tico]

Thanks for your comments Tico. Hope the new medicine is able to stabilize the platelets, so to give you Confidence a stroke is unlikely. Best to you!

[Tico in reply to CalrType1]

I''m still on same med jim, Hydrea. They swapped the Aspirin to Clopidogrel. I was on Apirin and Hydrea ( Hydroxyurea) when I had the stroke. Tina.🤗

[Hidden in reply to CalrType1]

Thank you for your kind reply and your wishes. Perhaps the most frustrating thing is that nobody can ever understand how one can feel. In fact I tend to believe that even the scientific community is unaware about the facts of MPNs, basing their assumptions on statistics. At this stage,it appears that platellet count is not directly related to thrombosis risks, progression and (possibly) symptoms. So it makes you wonder whether platellet reduction treatment can in fact yield any benefit (besides reducing bleeding complications for those with very high plattelet counts). Life is indeed precious but I can't help thinking how important quality of life is. All the best to you!

[CalrType1 in reply to Hidden]

You are welcome and thank you. It is a lonely disease. On my Mom’s side of family tree is stroke and Dad’s is heart attacks. So I view the Hydrea as a necessity. Great point on quality of life, mine has dwindled. I try to do the best I can ever day. It’s 5:41am, had a poor sleep, and it’s going to be an unproductive day. Maybe tomorrow to paint that bedroom walls. Hang in there! Best to you also.

[Hidden in reply to CalrType1]

I know what you mean. Lost one of my parents from a heart attack, hence the controls I was doing every year plus the stress test and arteries' scan. Nothing showed up in these controls over the years and so I am "technically" low risk. Because of the JAK2, they've put me on a relatively high dose of aspirin though (160mg) with which all other doctors disagree, saying it should be anything from 75mg-100mg. Nobody argues with the hematologist directly however, suggesting I should discuss lowering my dosage with him in my next control.

Many thanks and good luck with the bedroom walls!!

[BlushNoisette]

Dear Esson,

I have PV and JAK2+ . Iwas diagnosed back in 2006. Initially, I had a lot of venesections and then settled down to 2 or 3 every 3 months after a blood test and visit to my Haematologist. At the time I was advised to take a mini-aspirin (75mgs) every day which I did, taking the enteric coated form for a number of years; and that was it as far as treament was concerned.

However, by 2008 I was suffering with fatigue and severe back pain. I was prescribed dichlofenac (NSAID) for the back pain and within a couple of days things started to really escalate.

My experience after that had some definite parallels with your own ....... heart palpitations, gastritis, very sore mouth, gut pain, struggling to find food that I could tolerate, insominia, then anxiety and depression.

Like you I'm a steady type but I really felt out of control and struggled to cope with the various meds that I was prescribed. It took months for my gut and mouth to heal but my brain chemistry was still all over the place until I ended up in hospital. The psychiatrist took me off most of the meds that I was taking and prescribed venlafaxine (Pfizer's Efexor 75 mgs per day) and that did the trick for the brain chemistry and I recovered back to my old self within a couple of weeks.

Over the years I have learned to stay away from all NSAIDS including aspirin and certain antibiotics such as nitrofurantoin as these bring on gastritis very rapidly and then every thing goes crazy again. If you need to take a blood thinner, then there are alternatives to asprin which you could consider if necessary, so ask your GP.

Hunter is right about cytokines causing inflamation throughout various bodily systems, so I take good care of my gut and that includes healthy food, lots of fruit and veg, and a daily probiotic with lots of gut friendly bacteria. I also take a proton pump inhibitor, (low dose a few years ago) but now on 40mgs of pantoprazole daily. There are a number of different meds in this catagory so your GP can suggest which might suit you best.

People think that there are just 3 MPNs: ET, PV and MF and that each has a set of clearly defined sympoms and if your bloods are within normal range, then that's that. But its a lot more complicated than that and I have learned a lot from the website called mpnvoice.org.uk.

Over the years, I've been to patient forums and patient days and I've talked to others like me. It takes time to adjust to your diagnosis and to learn to find the management regime that works best of you.

By the way, some people have sticky platelets ...... its worth looking at mpnvoice website to find out more, as you have ET and it might be relevant for you.

In 2015 I applied to participate in a research project and that led me on to being prescribed a JAK2 inhibitor called ruxolitinib which made an enormous difference to the quality of my life.

So, hang in there, as you should be able to find a regime that allows you to function within your family situation and out there in the world. Be patient and gentle with yourself, and try not to worry as things will settle down in time.

I was lucky, my husband and I were both scientists and so could grasp the technical info reasonably easily but other family and friends "did not get it" for the longest time. Its not their fault. However, It is important that your significant others inform themselves about MPNs so that they can understand some of the issues and support you properly. My husband has been my rock.

I do hope that at least some of this helps you and please believe me when I say, you are not alone. Stay steady and take care of yourself. Best wishes, Lyn.

[Hidden in reply to BlushNoisette]

Thank you so much Lyn.

Our environment is an important factor indeed. I have a wonderful wife, who however has an entirely different approach to life. I used to consider her approach superficial but it turns out that it's her defence mechanism and I really envy her for this attitude now. She lives for the day, I consider every day as part of a bigger plan, to achieve something in the future. Now that "future" has become more uncertain than ever before.

My wife believes that this condition is something that can be dealt with aspirin alone, so the actual impact on my health must not be that serious. We can worry about it, the day things get worse. This is in line with what others in my environment think, including my hematologist. That my main problem is mental.

This was the main reason why I posted here in the first place. My feelings are in contrast with what others around me believe. This made me feel particularly lonely. Trying to understand if it's worth fighting for a better state of mind, if indeed how I feel has to do with the mental impact of the disease, or the disease itself, in which case, I am fighting a lost battle.

Guess I am just having a bad day...

[BlushNoisette in reply to Hidden]

Dear Esson,

I promise you that you can be happy and self confident again, and that your future has not been blown to hell by this illness.

At this stage, the fact that you are sleeping and able to live your life day by day is absolutely fine. Don't be so hard on yourself. You have been through a very rough and frightening experience but that is passed now. So, try not to worry about what may or may not happen in the future.

Please do explore the website mpnvoice.org.uk and make sure that you are up to speed on the facts. The health unlocked group is a very good place to get suggestions and support from other patients but you do need to look at sources of good reliable information.

On this site, Hunter's messages have contained a lot of good info and advice too. But you are just like the rest of us ...... discovering what does or doesn't work for us and learning as we go.

You sound very down in the dumps today, so try to relax mind and body. If your mind needs a focus, then make healthy choices ....... things that are constructive, fun, creative and positive will help to lift you out of unhelpful mind streams. Make sure that you get enough sleep as well as fresh air and exercise. Take care and best wishes, Lyn

[Timjonze]

Hi there. Your arrival at diagnosis isn’t dissimilar to mine. Most of my symptoms - indigestion, weight loss, fatigue, concentration, migraines - eventually led me to my diagnosis of ET. But they proved to largely be caused by other things. Citalopram massively altered my mood and energy, and a camera down the throat revealed i needed daily omeprazole to stop the indigestion. My daily aspirin for ET has stopped my monthly migraines so far. After sorting these problems I actually felt far healthier with ET than I did before diagnosis so hope that reassures you.

[Hidden]

I'm being told from my friends a family that having being scanned for a lifetime and being under closer medical supervision is not a bad thing after all. I've been avoiding all that and was limited to a regular blood test once a year.

My initial symptoms were also linked to something else. I have overcome my gastritis (probably caused by one month of NSAIDS) within one month on Nexium and regained most of the weight I lost within a couple of months. Back pain which was my very first symptom, has gone away and no more insomnia means no more sleeping pills at least. If I stopped there, I could probably continue to live with a condition I did not know I had and most likely be "normal" (in my ignorance).

Unfortunately I got obsessed with my health and wanted to dig deeper in what was going on, which fuelled my anxiety, brought more doctors and more pills to my life and I somehow feel as if I have caused this mess myself.

I am happy medication works for you and I continue with mine as it appears it is the only way to go, at least for now. Need to help myself for the meds to help me I suppose.

Thank you very much for this positive experience and approach to things!!