ET and MF

[jorestep]

I am Spanish, but I live and work in Gloucester, England, and to say Hello .., I was diagnosed with ET in 2020 and MF this year, and trying to manage this, especially fatigue and tiredness

[Cja1956]

Hi, jorestep,Welcome to this site. Sorry to hear about your progression. I’m also post Et mf, but I was diagnosed with ET in 2008 at age 52 and MF in 2019. The fatigue can be overwhelming. What medications are you taking? Are you jak 2 positive? How did the doctor diagnosis MF?

I find I can have bursts of energy, but I can quickly become exhausted. Sometimes my legs feel like lead. But I try to push myself. I’m still working but have reduced my hours quite a bit. I was in physical therapy this year for a herniated disc and they worked on my strength and balance. It really seemed to help. Now I plan on finding a gym so I can continue.

I wish you all the best.

[hunter5582]

Welcome to the forum. Glad you found your way here. I also had ET, but after about 20 years it progressed to PV. Sorry to hear you experienced progression to MF. The good news is that treatment options for all of the MPNs are improving. I am sure others on the forum can share what they have found to help with MF. This is a great place to get support and information.

All the best.

[Mostew]

Welcome

This site is a great find and source of comfort in times of need !! Some good folk on here as you will soon find out x

[Mazcd Partner MPNVoice]

hello Jorestep, welcome to our forum. We have a lot of information on our website mpnvoice.org.uk which I hope will help you, particularly fighting fatigue mpnvoice.org.uk/living-with... can download our information sheet with hints and tips for fighting fatigue.

with best wishes, Maz

[Scaredy_cat]

Hello jorestep. I too had ET which has just progressed to MF and am also being treated by Gloucestershire Royal Hospital. I have had very good treatment from the haematology department there.

[ksos]

Hi Jorestep and welcome! This is a place of so much useful information, camaraderie and comfort. Glad you're here. Kim

[Wyebird]

Oh bless you. So far from home too.Welcome . This site is my life line. It can be yours too.

[Doggy1903]

Thanks for sharing your stories, its a help to others to know each of us are not alone.I am a 'youngster' to ET diagnosed 3 years ago, but I like to hear how you cope and what time spans different people have before progression.

The tiredness seems a very shared problem and you can only do so much, our systems are very good at telling us when to rest ! Its not always possible but where poss,good to go with the flow!

Take care.

[blueseas45]

Welcome to the site. Hopefully treatments will help you.

[Oscarsboy]

Hi jorestep. I joined this forum a couple of weeks ago having just started on treatment for ET+ JAK2 and have found everyone so helpful and willing to share their experiences and information. I am sure you will it very helpful and reassuring.

[Mamab83]

Hello! I’m just curious if you had a bone marrow biopsy with your first diagnosis of ET? Such a quick transformation to MF was wondering if you were misdiagnosed with ET originally? I wish you all the best in health 💕

[Annula]

Hola jorestep - luckily I have ET with no progression so far...The physical therapy sounds really positive, so I hope you can get some help with your fatigue symptoms.I take magnesium which helps generally.

[linphy]

Welcome Jorestep, I was diagnosed with ET Jak2 4 years ago. Information and chats from group members is always helpful. I attended Worcester Hospital