Possible MDS, Doctors downplay sus. bloodwork

Hello guys,
it’s been 2 weeks since the last visit and I am not coping well.
I still have a lot of uncertainty. I am very convinced that I should at least consider having Myelodysplastic syndrome (MDS) and this perspective is not easy to cope with.
I am in a rut and I really let myself go because “what’s the point”.
And I am not even diagnosed yet!
It’s a tiring pursuit and at the end something’s waiting that I do not even want.
My internet addiction is through the roof as well.
I’ve never been a very resilient person, but I am still surprised at how fast I let myself go. I thought I was a tad bit more stable.
It’s weird that I don’t want to die early but on the other hand over the past few years I haven’t had exactly a zest for life. And although I consider myself a Christian and repeat the word “gratefulness” like a Mantra, the way I deal with my life and even waste it says otherwise.
I told my sister about my issues and she thinks that I am a hypochondriac.
I think that my worries are justified, but my behaviour is not. People with a life-shortening prognosis still live their lives.

Just a few thoughts of mine.
I hope that you guys are doing well.

Kind regards,
Sarah

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Hi @SarahD1702 thanks for having the courage to write such an honest, eloquent post.
You also show so clearly how we can have conflicting thoughts all at once that just are not logical.
You also admit that you have let yourself go and have lost your zest for life. I find when I let myself go I do not realise it at first and then I sort of spiral down so quickly and it takes so much longer to build myself up again. But a different outfit, using my curling tongs and a bit of make up and it is a start.
Perhaps it is OK for Christians to question how they lead their lives and their faith as opposed to just repeating the words like a mantra.
Uncertainty is scary.
I think awareness is the first step and perhaps be very kind to yourself.
Personally I found counselling via my GP helped me
Thanks for your post you have really made me think too.
Please do keep posting I learn so much about myself from you and look after yourself

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Hi @SarahD1702 ,
I’ve just come across your post and wanted to say that all your thoughts and feelings are valid. A very wise person once told me, " for all emotions and behaviours, there is a reason". Everyone deals differently with things and your feelings and behaviours are your very unique way of responding to your fears. Reading your posts, I can feel your fear and I get a real sense of loneliness. It sounds as if no-one is hearing you. Do you have anyone you can talk to or share how you really feel? I know you say you don’t want to tell your family but I often find a problem shared is better than carrying the burden alone.
For me ,it’s the waiting that I find the most difficult to deal with, especially every three months when my next results are imminent.
Please let us know how you are doing.
Sending hugs,
Alex

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Guys I’m heading to the emergency with random paper-cut like cuts on my finger which bleed but not hurt.
Expecting the worst - at least a correlation with my bloodwork.
I am very scared. Prayers are appreciated.

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I feel like the time has come. Or ai’m just being dramatic.

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Oh @SarahD1702 I am so glad that you have thought to post on here, especially when you are feeling so scared.
Perhaps tell the medical people how scared you are and what your fears are and be pleasantly assertive and ask for answers
Please do let us know how you get on, I will have my fingers and toes crossed for you.
Be very kind to yourself and please do keep posting

Hey there @SarahD1702, been trying to find your thread as I remember reading about your health concerns and wishing I could offer support. At the risk of being someone older giving patronising advice, I just wanted to reassure you that it doesn’t matter how real, dramatic, or “mental” you feel about your health, it’s all valid to you and can of course totally affect you overall. Your mental health is still part of your overall health and also needs tending to.

It does seem that anxiety can take over and affect you adversely from what you’ve shared, so I wonder if I may offer you an exercise that helps me when my own anxiety takes over? I live with PTSD as well as Polycythaemia vera (PV) and have had to figure out ways to minimise the inherent anxiety of trauma and cancer.

Mindful ABCs of STOP:

S – Stop
T – Take a breath
O – Observe what’s going on
P – Proceed

This can be done any time during the day when you remember. You become aware of what’s going on around you or inside of you, you ground yourself with some conscious breaths, and then you proceed with more clarity and from a place of choice.

Here are three ways to practice STOP in more depth:

A: STOP for awareness

Using the STOP practice to become fully aware of the present moment. What is going on in the body? The mind? The emotions? Or ask yourself what is out of my awareness right now? It can be as simple as noticing your brain is foggy after being on a long call, or that you need to stretch your legs outside, or that you have been preoccupied with an upcoming meeting all morning. Simply stop and take a breath.

B: STOP for beauty

Pause for a moment and notice something beautiful in your surroundings. It can literally be to “stop and smell the roses”. Use all of your senses to find something to focus on and then take it in visually for a breath or two. If that feels too big of a stretch you can say to yourself; “I know this is a stressful moment right now, but if there was something beautiful about it, what would it be?” Maybe then we notice the flowers on the table, which blend into the background when we are busy. Or the beautiful hair of the person in front of us in the queue at the shop. Maybe even the delicious aroma of the trees around us, heated by the sun.

C: STOP for compassion

In a moment of stress or pain, practice STOP to open your heart to kindness and compassion. Compassion is a natural, caring response to suffering, big and small, in ourselves and in others. Sometimes the tug of compassion calls us to stop, at other times we need to stop and really take something in, so we can be more open to inviting compassion in. Maybe we are a little impatient with a loved one complaining at length about something that happened to them. Maybe the adult brain doesn’t see it as hurtful but stopping and truly listening might allow us to connect with the truth of someone else’s hurt and help us to empathise a little better.

These are clinically researched ways to slow down the racing thoughts that anxiety can bring on, and they help me in my most triggered states so I hope they might help you too. Part of the trick of dealing with the very natural anxiety response in ourselves is to acknowledge that being hypervigilant has helped us as human animals in the past, but now we don’t have to be so wary of predators and prehistoric types of danger. We don’t need to be on high-alert for so long and it in fact can do slow damage to us if we’re always in a heightened state of anxiety. It’s natural, it’s to be expected, but we don’t need to be so anxious when we’re not in imminent danger.

I note that you have youth in your favour and it’s worth remembering that we’re considered adolescents until our mid-20s while our brains are still forming. Now is the time to slow down that anxious thinking and practice not letting it take over. You’re clearly well-read and able to parse complex medical information. Some of the energy spent on anxious thinking could be put towards practicing regulating your breathing and slowing down the racing thoughts.

Looking through your posts I couldn’t see where the diagnosis of Myelodysplastic syndrome (MDS) came from. Is it something a doctor mentioned years ago? Is it a self-diagnosis? I realised I likely had Polycythaemia vera (PV) after getting a blood test result come back confirming a gene mutation that usually indicates my type of blood cancer. The bone marrow biopsy I had added another level of confirmation, but they aren’t always needed for diagnoses. If you don’t have symptoms, gene mutations, or blood cell numbers indicating a blood cancer, it might be worth trying to trust the test results as they don’t have biases like us humans! I find my regular blood test results weirdly reassuring as they literally measure what’s in my blood. Perhaps you could locate something unbiased in your test results that you can build trust up from.

I just wanted to say I’m really sorry that you lost your dad, and at such a young age. I lost a parent when I was young too and it’s a Big Deal, no matter how much time has passed or expectations to get over it sooner or whatever. Others often don’t know what to say or do when confronted with such a pivotal loss. Tolerating the death of someone so formative whilst also experiencing health concerns is quite the double-whammy. Please don’t underestimate how massively grief can affect all sorts of stuff, sometimes seemingly totally unrelated. It can be like a slow-moving dark cloud over everything, or a sudden burst of loss at inopportune moments, so the worry about health and grief can get all mixed up together into a nasty worrying mess. Sounds like you need a good hug and a keen listening ear and I wish things were easier for you!

My final advice would be to find someone you trust to share this all with and have them attend appointments with you. During my Polycythaemia vera (PV) diagnosis appointment I was pretty zoned out with anxiety and my spouse was with me taking notes. Having others to share your concerns with can really help ground you in these understandably heightened states of worry. Anxiety about a diagnosis that confusingly doesn’t quite match symptoms and blood readings and so on can feel less overwhelming when shared. As they say, a problem shared is a problem halved. You say you have Christian faith, and I wonder if you have folks at church to support you? I understand that religion and science don’t always mix so well, but perhaps you can find some relief in your shared beliefs with others?

Thinking of you @SarahD1702. Remember you’re not alone and can always come here for support.

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Hey guys, thank you so much for your support that night. My bloodwork was unexpectedly good that night with leukocytes over 4k and my MCV has decreased. It is hard for me to trust this as it’s almost magical for me??
I was released the very same night.
I am sorry for not texting sooner but I just wanted to forget about that night. I still can’t believe how I was let off the hook!
But now my sister knows everything, so I have real life support AND you guys! I just want to thank you so much.
I wish you all a blessed 2024.
Love, Sarah

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I am so glad your sister can now be a support to you @SarahD1702
Perhaps listen to the positives as much as you do the negatives, I am the same.
Perhaps just look after yourself and keep posting.
The Blood Cancer UK support line is there if you need them on 0808 2080 888 xx

Hey guys, it’s me again.
I had another appointment. Everything was okay except for
white blood cell 3.4
and MCV 97.4

The hospital range was til 101 for MCV, but I know that this count has increased over the last 4 years for me. And my white blood cell has been better recently.
I am very unsettled abou the MCV. But the hematologist says it’s still okay and nothing has to be done.
I should be happy that multiple medical professionals aren’t worried, but I cannot shake off the feeling that something’s being overlooked.
He said it’s most likely an autoimmune issue, but hasn’t found anything!
I have seen 3 hematologists in the past 2 years. Nobody has an explanation yet nobody wants to perform a BMB.
My sister says that I should be grateful and stop googling and accept it and just move on. But I am afraid of moving on. It feels so wrong with this thing above my head.
I am very confused. I know that a lot of people have it worse. And that I don’t have a fatal diagnosis yet, so there’s no reason for putting my life on hold. Even with a life-threatening diagnosis, life should be lived to the fullest and every day is a gift.
That’s what I know rationally. But I cannot feel it yet. I am just very disappointed because I thought all counts have improved under B12 supplementation but that’s no the case.
What should I do? Seek another opinion? Accept it?

Kind regards and thanks for reading
Sarah

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@SarahD1702 it really is a dilemma for you, isn’t it.
To be honest I do not think anybody can make a decision that you would be satisfied with, it has to come from what feels right for you.
Actually I wonder if you might benefit from some talking therapy so you can unpick it all and explore what might be your way forward,
It has helped me in the past.
Once I sourced it via my GP and the other time via my works Human Resources Dept.
Alternatively if it were possible you might consider a private second opinion at your cost.
Be very kind to yourself, I have found that my thoughts and emotions are not logical, they can conflict with each other and oscillate.
Please do let us know how you get on

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Hello again @SarahD1702, I can see that pesky anxiety is doing its thing again. It’s horrible, I feel for you. When will it give you a break?!

I’m no medical expert but I agree with your sister that googling your test results may not be the best idea! Have you checked your results on medical websites where the information is checked by experts? Many health websites only share articles that have been checked by doctors with relevant expertise, so maybe stick to those when you’re hankering for facts.

I’d say take it as good news that you’ve had 3 different haematologists checking your blood over a period of time and they can’t find the diagnosis of Myelodysplastic syndrome (MDS) you’ve mentioned and don’t see the need for you to undergo a BMB! This is perhaps the ideal scenario. I wouldn’t wish a BMB on anyone, even for those of us with more clinical evidence of suspected blood cancers, as they can be very uncomfortable and do have risks, like nerve damage. If you don’t need a BMB I wouldn’t recommend seeking one out.

Something that may help a little is accepting that all of us have variable blood cell numbers, affected by infections, our diets, and undiagnosed ailments that we can catastophise about but sometimes just aren’t a big deal overall. For example, I had a gross kidney infection last year and my blood cells were all over the place due to that, but it didn’t mean I had anything more nefarious other than an infection that passed. Something younger me would have hated to hear is that we all age and our bodies will just do weird stuff. The facts and figures that test results are linked to are only guidances. Science adapts over time, different regions use different facts and figures, but healthcare is not always an exact science because our bodies do not always behave exactly how we expect or want.

I’d second @Erica’s suggestion to seek out therapy if you can access it. It’s not a sign of weakness or a moral failing to look after your mental health like you look after your physical health. Maybe you could try to channel your need to analyse health information into looking after your psyche with similar energy? You’re still living through a time of great loss of your dad which in itself would benefit from some time and support to process, which therapy is the ideal treatment for.

Let us know how it goes and if you get any further with finding out what’s causing your concerns. And like your doctor said, it might be worth seeing if there’s an autoimmune issue.

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Hey guys,
Today, I got blood drawn again. Just a routine check on my part. I am very nervous and I pray that I might get stable or even relieving results. What is very weird is that I dread a BMB but I also dread the uncertainty.
However, @Duncan , your mental health advice was spot on. I have a history of depression, among other things but with my last move I stopped therapy. I thought I might make it on my own but there is no shame in admitting to need help. Well, I am past the admitting stage - the problem is finding a therapist with capacity. Thankfully my lovely older sister supports me.
I hope that you guys are doing well. Of course I am going to tell you the results.
Love, Sarah

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Hi @SarahD1702 please do tell your medical team how anxious you at your BMB, many people are so they are used to it.
Wow I really admire you going back to therapy and there certainly is no shame in admitting it, it is a tremendous strength in my book.
Yes, definitely shop around and find the right, not easy, therapist.
It sounds as if your lovely older sister is a real support for you.
I still, after 20 yrs, get anxious before, during and after tests, results and appointments, I had my blood tests yesterday and have butterflies and feel sick.
Oh yes, we want you to share the results, be very kind to yourself.

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Aww this heartens me, @SarahD1702! I’m really glad you’ve got the support of your sister and that you’re still keeping on top of your blood testing to make sure it’s okay. Try not to worry about a BMB, it sounds like you haven’t needed one yet and long may that last!

I really wanted to say well done for seeking therapy. It may take quite a wait to find someone available, but go with your gut feelings when meeting a potential therapist. It may be that you find one who practises online and research shows talking therapy is just as effective via video call as it is in person. Other more specialised psychotherapies like art therapy are better in person. If you’re looking to see a therapist privately, which can be expensive but worth it for having ongoing sessions beyond the usual 6 that are offered on the NHS, have a look at BACP.

Keep up the great self-care!

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