Im so sorry to hear about your diagnosis of ET , I hope your treatment goes well for you . It must be a scary and worrying time for yourself and family. How was the process and tests for you if you don't mind me asking.
Im also on the same path although not 100% diagnosed at the moment but the last consultation I had with the Haemotologist mentioned ET
Im waiting on further testing on my bone marrow biopsy which was inconclusive but had abnormal cells so it's a waiting game . I'm preparing myself but the wait will be 2 months . I'm in my early fifties ! Happy to chat if this helps . Best wishes
I was experiencing severe headaches and debilitating fatigue that no one could explain for about 3 years
The headaches were treated as migraines and no medication would take edge of it . I was also over the years treated for Low iron levels so have been treating myself conservatively at home with diet and supplements.
Last year the headaches got severe and fatigue worsened and couldn't function. I could barely move my limbs. I also lost a lot of weight and was experiencing lots of night sweats and numbness on my fingers and legs. I called my GP and requested a blood test as thought I was anemic. After the results came back the Doctor called and said Iron levels were normal but platelets were high. After asking her how high they were she mentioned they have been subsequently higher from the previous blood tests over 3 years but no one picked it up. That's how I got referred to Haematology over a phone call and she was advised to start me on Aspirin. So my initial assessment with the Haematologist they did lots of blood tests and that's how they confirmed it was ET.
Well it's been nerve wrecking but trying to get my head around it . Am only 36yrs and got a 3 and half year baby so scared of the treatment and outcome and future.
My main problem is fatigue, but some days are better than others. Doesn't help when I have to get to work either. Do you have any symptoms??
All the best with your further tests. Try keep busy as you wait . The waiting time was nerve wrecking for me.
Sounds like we've been on a similar journey, my high platelet count was picked up on a routine blood test although on my drs records it's been high for a few years but not looked into before now when perhaps it definitely should of been I'm not sure why ? It's been challenging for both of us , but hopefully your be treated and feel better. My symptoms were , extreme fatigue, unexplained bruising, dizziness mainly. The way the consultant explained ET was with the right course of treatment and monitoring you can live a normal life . The waiting is definitely the worst part I'm kind of preparing myself mentally for my appointment but it's some 2 months away unless it's changes .
My workplace have been amazing I do a very physical job which hasn't been affected as yet and very early starts so i do get tired easily. I have one daughter who's 26 and her job takes her travelling away on a regular basis so I'm finding it tricky emotionally, my partner has been great and also my sister.
I do hope you have family around you for support I've found the forum very helpful when I'm feeling uncertain.
Unfortunately my Family don't live close by but I got an amazing friend around the corner. She's been my Rock for the last few years.
Currently raising my daughter alone since I was about 4 weeks pregnant after been discarded by my abusive partner so it feels like double tragedy.
I had just or thought had finally picked my broken pieces then boom . It's been a roll coaster of emotions. Trying to be positive for my daughter.
I haven't told my work place yet but will once I start treatment. I do shift work and nights because it's easy with childcare so hard too but trying to change to days.
Im glad you have support of a good friend that's close by you . You've been through so much already but keep positive. I know easier said than done . I really feel for you .
I raised my daughter alone for many years and her dad left when she was 1 . My relationships have been challenging for most of the time and it's only recently I would say the last 5 hrs that I've been truly ok and happy.
My family are aware of my issues but not my mum who's 85 . Im sure work will be empathetic to your health issues as they have a duty of care . I'm always hear for a chat if you need .
Thanks . I will keep in touch . Sometimes all you need is someone to chat to. Yes am glad to have my friend around .. I actually moved near her after my relationship broke down as it was such a traumatic experience. My Parents are deceased. My 2 Sisters are aware thou not close by . I am sort of blaming myself if I really made myself sick as a had a breakdown the last few years . I couldn't cope with my partner's betrayal .
He made me go through hell ..broken emotionally, physiologically and financially. We had go through a rough patch - infertility period but he left after the IVF treatment worked which was traumatic experience over the years. But bottom line he was a narcissist. I am better than I was emotionally but can't stop wondering if the stress I went through triggered this ET . I am blaming myself.
In the meantime I am trying to let things go and recollect myself for this journey.
Lovely to hear from you, it's so nice to be able to chat on here and say your true feelings. I have a great family but don't want to burden them with my thoughts. I'm sorry your parents are longer here , I lost my dad unfortunately when I was 23 very suddenly and my relationship with my mum is different. My dad brought myself and my twin sister and brother up by himself .
You've been through some dramatic times so try and not blame yourself for your health issues .
The way I coped on my own with my daughter was to think how lucky I was to have her i too struggled to conceive but didn't have ivf treatment. I got up every day thinking this , working , and keeping our home together this gave me the strength to carry on .
Never blame yourself ever , I hope you can be kind to yourself . Once you have a treatment plan things will be clearer . It's early days . Have a good day too.
