ET struggle: Hey there, I was diagnosed with ET... - MPN Voice

MPN Voice

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ET struggle

Wadz
Wadz

Hey there,

I was diagnosed with ET Last year after testing positive for CalR mutation ..

I have always suffered from dizziness and constant fatigues and horrible menstrual cramps but I never knew it was because of my condition.

I had some ups and downs since I was diagnosed but currently am on hydroxyurea and clopidogrel but my platletes count is 900 (even though in the past couple of months hydroxy urea was effective and lowered it to 200 so I don't know why the sudden change)

My life is very difficult right now. I am always in pain and last week I experienced awful episodes of nasuea plus dizziness that I couldn't even concentrate at work and my doctors doesnt seem to have a clue about what is causing them

I have gained around 40 pounds and I can't even stand looking at myself in the mirror and it's hard for me to go on a diet and I can't even exercise because I have degenration in my knee joint. I have gained weight in the past before I was diagnosed but I always managed to diet and lose the extra weight although it was very hard with my constant fatigue.

I am only 24 and I just graduated and started a new job. sometimes I think about giving up on having a career due to the awful pain and discomfort am always in.

I am afraid that I will be considered a weak person who is using his not serious condition as an excuse to be lazy and fat.

My friends and family are very supportive but they always say stuff like "u should be gratefull u don't have a serious cancer and stop being negative and live" which I tried to do but some days are just too hard.

sorry for the long post

10 Replies

So sorry to hear the ordeal you are suffering.

When are you next seeing your Hem? It might be worth asking whether you should switch drugs to Pegasys? Some people who struggle with HU find Pegasys (Interferon) very effective.

When did you last have a bone marrow biopsy?

Are you JAK2+? And do you know whether you are CALR Type 1 or 2? CALR Type 1 is a good mutation to have re long term prognosis.

I think that we are all in the same boat. We all suffer degrees of fatigue but we have to not give in, that’s the slippery slope. That means healthy diet, loads of water and exercise. Perversely this will make you feel better!

I pleased you have joined us and hope you will benefit from the mutual support you will receive. Please ask any questions you want, there is a wealth of experience here.

Best Paul

Wadz
Wadz in reply to Paul123456

Thank you for your support.

I don't know much sadly my physician is not very informative and she didn't think it was necessary to do a biopsy. It was only confirmed by the blood test for the mutation.

Hi Wadz and welcome to the forum.

I agree with Paul about considering treatment with ‘Pegasys’ especially because you’re so young. I’m surprised that you weren’t offered this as a first line option. Do you live in the UK? Again, because of your age, it would be ideal if you could have a consultation with an MPN Specialist.

With regards to weight issues; I think we have to be in the right frame of mind to tackle these things. The physical certainly impacts the mental, so it’s really not surprising with your ET diagnosis, heavy symptom burden and starting a new career that you find your life difficult right now. I’m sure how you feel right now will not always be the case, things will improve.

My advice would be, try your utmost to be referred to an MPN Specialist who will be up to date on the latest research/treatment and who will regard your age as a significant factor in treatment.

You could always ask Maz, the forum administrator for a ‘buddy’ this is someone with the same condition as you and of a similar age.

Congratulations by the way on your recent Graduation.

Mary xx

Wadz
Wadz in reply to mhos61

Thanks for the support and kind words.

I am not from UK and I don't think there are MPN specialists in my country I went to many doctors before I was diagnosed and no one was able to confirm what was wrong untill I went to this last one am currently with. I will ask her about the treatment options in the next visit

Mazcd
MazcdAdministrator

Hi Wadz, there is no need to apologize for a long post, we all understand how you are feeling, I just hope that the replies you get from the lovely people on this forum will help you. It is definitely a struggle some days to cope with the fatigue, gentle exercise can help, even if you feel you can't get off the sofa, a short walk will help. As has been suggested, a buddy might help you, being able to speak with someone who really understands how you are feeling might help, if you would like some details please email me at maz.cd@mpnvoice.org.uk. Kind regards, Maz

Wadz
Wadz in reply to Mazcd

Thank you for your kind words.

Oh one of my friends said something similar to what your friends said to you. It really peeved me and I still become vexed when I think about what she said. As for every thing else, it’s going to take time to sort yourself out. Where do you live? Do you have access to a counsellor? Did you feel any better when your platelets where 200? I don’t know what your haemotologist is like but maybe she/ he can point you in the right direction and give you the support you need. Mine has put me in touch with a dietician and now I’m waiting for an appointment to see and OT to help combat Fatigue. Macmillan councillors are amazing. Mine helped me discuss my symptoms and feelings with members of my family. Believe it or not it can take a long time to stablize your meds. I’m Calr ET.

Regarding your long post. Write away. We support each other here.

Please keep us informed.

Hugs hugs hugs

Wadz
Wadz in reply to Wyebird

Thank you for your kindness and support. I live in Egypt where I don't think there is much knowledge about MPN but it is okay. I think it was better when my count was 400k because I had severe bleeds when my platlets were 200 plus I bruised very easily.

Hey foe exercise have you tried thoz electric muscle stimulation. Me and my missus who has ms use them and they do work with constant use. You can buy them realy cheap from a site called wish. I recommend them.

Wadz
Wadz in reply to Frankydafish

Thank you I will check them out

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