Please talk to me!!!😢😢😢

[MochaMommy23]

Thanks for everyone trying to help me. I had a panic attack last night because I have what seems to be bone pain in my left side knee and deep in my upper right arm. Here are my stats: menopausal 49 yr old female, 44.7 (44 is upper limit) HCT, steadily rising MCH (but within normal limits), declining WBC ( middle range of normal), RBC (upper end normal at 5.10), platelets steadily declining at 191, MPV steadily increasing and now at upper limit of 12, fullness after eating tiny bits, tenderness in stomach and sometimes pain on both right and left around ribs, foggy brain feeling. I do not drink near enough water but have been trying to do better, I do drink a lot of coffee, I do NOT itch, I am tired, not walking or exercising for years so hardly no exercise due to a desk job, petechiae, and appt with hemo isn’t for another week and a half. Can someone settle my mind with any of this. You all are so supportive but I’m letting fear take over. 😢

[Cja1956]

I know it’s easier said than done but please try to relax. Is this your first visit to a hemotologist? Were your platelets high before and now they are dropping? You need to find someone who will walk with you for exercise and to force yourself to drink more water. It has really helped me. I know how hard it is to get motivated but it’s worth it. Have you talked to other specialists about your symptoms? I hope you find the right diagnosis soon.

[Hidden]

Dear MochaMommy23,

I hope the best for you and know that you are not alone.

It is good that your Dr. appt is soon and hope you will have answers then and know what is needed.

Good luck.

[Mazcd Partner MPNVoice]

Hi, we really do understand how scared you are feeling, it is a very distressing time when you are waiting for a diagnosis, and it is very easy to scare yourself by reading things on the internet. It might help you to go and speak to your GP about your anxiety as this is clearly having a huge effect on you, your doctor will be able to help you with this, there are lots of therapies you can try, like mindfulness, yoga and meditation, and maybe counselling might help, but please speak to your doctor. Once you have a definitive answer from your haematologist about your blood levels you will then be able to focus yourself on learning more about the diagnosis, whatever it is, and finding ways to cope. Best wishes, Maz

[Wyebird]

Oh how you need a big hug.. it’s horrid going through the waiting. I’m afraid you might Just have to prepare yourself for more waiting whilst test results have to come back. You will get through this.

Until I found mpnvoice and this site I found having an mpn a lonely road.

How about treating yourself to an alternative therapy- massage- reflexology. Pamper yourself.

Good luck

[Searcher56]

I am ETJAK2+ on 9xHU+aspirin aged 63. I do not know anything about your symptoms but by the sound of it, your lifestyle could do with improving. Lots of coffee, little water, no exercise. When I was diagnosed in 2016, it was a wakeup call and I started to take better care of my health. I went on a diet of no coffee, tea, dairy, sugar or gluten and I lost 3st in 8 months. Also I exercise now, go for a walk in the morning, yoga, weights and many of my minor health issues have disappeared. I am constantly looking into new diets and ideas and trying them out, even if only 1 in 10 of them do anything, that's better than nothing. I am currently on an Elimination Diet and already it has had unexpected results. If you follow my post, you will get more information as days go by.

[Richinspirit]

Oh dear - a panic attack itself is the most awful of things, so very sorry you have experienced this. But, you must must must get out there and walk ...... even if it is cold and wet - it really does help. It is so easy to do other things other than walk - but take it gentle and you will feel the benefits straight away. And, get that water down you - the coffee will only fuel your nervous tension and certainly no good if you do experience panic attacks. Practise all the deep breathing tips you see online - again it is simple but effective and no need to go outdoors. Very best wishes to you - there is a whole community here all supporting you.

[Bridie123]

Hi there, my heart goes out to you. It can be so overwhelming at times. It will pass this bout of stress. What helped/ stopped me in the early stages like yourself, was the comfort and support of every one here and a verbal slap on the face from my doctor, he said " you are over analysing every thing" and I though, yes I am! So I leave the numbers to them now and just have periodic bouts of stress about how rotten I feel!😉

Try to have some mental rest each day. It's spring here in the UK and beauty is to be found every where and I find standing still and staring at the buds breaking open on the trees ( birds,blossom, flowers etc.) Marvelling at the intricacies of design while the cool air is on my face as well as the warm sun on my back and best of all the soothing birdsong, just for a minute or two ,is very calming because you are forcing your mind to stop racing and focus. Take care 🤗

[CarolineDavies]

I’ve had ET for 13 years, & am 50 now. I actually had panic attacks in the 90’s every night for 3 weeks so know how awful they feel. In the end I was so fed up that on the night they stopped I really made an effort for the attack not to get going, & they just stopped! Only had a few since then when really stressed. I try & slow down my breathing, & keep a paper bag to blow into as that restores the lost Co2. Distracting myself with music or putting the tv on helps too. Personally I only keep records of my platelet levels not all the other stuff as I believe they’re ok, & it’s rather confusing too! xx

[Johnsb]

Sorry to hear of these challenges. I have PV and am JAK2+. I have noticed that I can have leg aches startup in weird places for no real reason and go away with no real reason. I can go for weeks with no issues, except a little fatigue and then wham it hits. I wish there was a magic pill I could give you to help you. I have tried and had good luck with a moderate protein and high-fat diet with lots of low carb veggies. Sugar seems to set off my symptoms, which makes sense as sugar will increase inflammation. You might want to start a food and challenges diary to gain some control over what's going on and see if there are any patterns for you. We're all different. I am sure there is some mix of things that will work well for you. I had not had an HCT over 45.5, I get drawn at 45, for over 18 weeks, then I hit 45.3 got a draw and 6 weeks later I am at 51.6 the highest in a year!! I push my hemo to let me get tested and a week late, I'm scared, and I'm at 13.4, HAHA go figure that one out. I can empathize with you.

[MochaMommy23 in reply to Johnsb]

Yes it is all so confusing. Many on here have given me hope that it may not be PCV based on my numbers but my HCT (44.7) is outside of our labs “normal” of 34.5-44. I wouldn’t be so concerned if it weren’t for all these crazy symptoms that point right back to PCV. 😞

It’s hard to ignore your ears ringing nonstop

[Johnsb in reply to MochaMommy23]

Mine ring but I have a hearing loss in a specific frequency and although a hearing aid doesn't fix the problem it mitigates it by amplifying the sounds I do hear and it makes it possible to ignore the ringing. Have you tried the tapping thing on the back of your skull for the ringing, some people have great luck with it?

The testing for the JAK2 gene is easy and here in Colorado very quick like 2-3 days. Hopefully, you'll get an answer soon.

[Greenbus99]

Hi , I really think you need to wait and get some clarity on your diagnosis. There maybe other possible reasons for your rash and blood levels seem reasonable for a MPN. Perhaps doing some relaxation might help your anxiety also as well as getting some exercise which also had the benefits of stress relief. In my local hospital the psychology department have done a great relaxation piece. If you are in the UK Simply Google: QEH relaxation and scroll down to listen to some lovely relaxation. It's worth a try. Good luck with it and hope your app goes well with your doctor .

[MochaMommy23 in reply to Greenbus99]

What do you mean seem reasonable for a mpn? I don’t understand your comment I’m sorry

[Greenbus99 in reply to MochaMommy23]

I just meant that for diagnosis of MPNs the blood levels are more often much higher. Haematology is a very complex area , I am a registered nurse and it has taken some time for me to get my head round the complex disorders and even now it still gets confusing.

[Greenbus99]

qehkl.nhs.uk/relaxationaudi... this is the link to some Relaxation done by my local clinical psychology team at The Queen Elizabeth Hospital . Give it a go,bit might help you with your anxiety.