Hi. Diagnosed with ET CALR Type 1 June 2018. I will be 60 tomorrow. I have been on a 4 year journey to find out what has been causing all sorts of bodily aches and pains. Now that I have the ET diagnosis, the doctors are unsure if ET is causing my aches and pains (joint pain, muscle aches, hard painful bumps under my skin, flu aches and pains every day). I guess the type 1 CALR effects a lot of cell regulation that doctors do not know about. Due to my complaints and concern about my trouble doing complex tasks at work, a few weeks ago I had the complete neurological battery of tests. The result was “mild neurological disorder” or “mild executive dysfunction.” The doctor stated that “executive dysfunction is 1 of the most prevalent area of cognitive difficulty seen in patients with essential thrombocytosis...” Has anyone with ET been diagnosed with executive dysfunction (working memory issues)? Any CALR type 1 mutations on the board? I am concerned about the likeliness of my ET transforming to myelofibrosis, especially with my unexplained aches and pains. Thanks and happy holidays.
ET and Mild Executive dysfunction.: Hi. Diagnosed... - MPN Voice
ET and Mild Executive dysfunction.
H CalrType1... 
My name is Steve and I was also originally ET CALR+ but Type2. I am now MF.
However, I just wanted to add that I too suffered badly from what you are calling 'Executive Stress'. Unfortunately, the fatigue is/can be, so overwhelming at times that functioning at my same previous levels did become quite impossible... Yes, memory issues for me were also very disturbing, although I do seem to be coping better with that these days...
I have also had two (2) TIAs, (minor brain strokes) from my very high platelets. Although, since having started med's that seems to be better under control, while yet still very high at times, c. 1M, (my platelets I mean of course).
Have you had a Bone Marrow Biopsy (BMB) as yet?
It can be useful to ascertain whether or not you have any scarring of your bone marrow etc.
I have had two (2) in three years, and they are generally simple procedures.
Aches and pains are unfortunately part of the unwanted symptoms of having any MPN... As is having issues with fatigue...
Hopefully, many of the others here w/ ET that are also CALR+ will respond to your post in due course. However, I am happy to try to answer any questions you might have as best I can of course...
Welcome to our little club
Steve
(Sydney)
Thank you Steve. Yes, I did have the BMB in June. No scaring but a criteria of premyelofibrsis. But nothing to change et diagnosis. It is a special club I am learning. Thanks again. Jim (Wisconsin USA).
No problem Jim...
Any time...
Best wishes for the season to you and yours too Jim
Steve
Hi Jim. I live in Wisconsin part of the year (the good part) & there’s a support group for MPN patients run out of Froedert hospital in Milwaukee. There may be others. Where are you & who’s your MPN specialist? Katie
Hi Katie. Face to face support group is not for me. Thank you for the information. I hope your MPN is stable and you can function well. Enjoy the nice you weather.
Yes, me either. Can you tell me please where you had your cognitive testing? Thanks
Sorry, no I can not. I told my hematologists my trouble doing work tasks, then I saw a neurologist who order an MRI. He also had me see a psychologist to have a complete round of neurological tests. These tests are standard procedure to find out what areas on brain are in deficit. I think they are the same tests they do for concern for dementia. If I get worse, I can do the tests again and determine what areas of brain are getting worse.
Thank you for making me feel less alone with all my symptoms. I am determined to carry on working but am plagued by these on a daily basis. I have taken to asking the (apparently) dimmest questions of my colleagues because I get so confused sometimes, trying to carry out the most average tasks. I get so stressed when this happens. I take sublingual B12 and much of the time it helps but not always. ATB. Penelope x
You are welcome. I feel better knowing I am not the only ET person asking questions at work. I just can not remember all the procedures sometimes. My mind is blank and I know I should know how to do it. Very unsettling feeling.
Then trying to explain to doctors and treated poorly. At least neurological tests now support what I am telling doctors.
At work I have learned it helps me to be real focused on each step to get job done. One step at a time rather than multitasking and losing track of what I was doing.
You are describing my own experiences, exactly. I had been so worried for a number of years, that I was declining mentally and that (for some reason) I could no longer remember the most simple, everyday processes. At least now, since diagnosis, I can ask the questions and blame the 'condition', of which the majority of my colleagues are unaware in any case. I am aware however and it makes it OK.
All the best. Keep positive and know you're on the right track! x
My memory is not as good as it used to be. I am JAK2+ ET, 62 years old on 9x500mg HU. I often asked my non-MPN friends about their memory and decline in memory function is happening with them, too. A herbalist told me to sniff rosemary. I have a bottle of rosemary essence and I sniff it a couple of times a day. There are strategies to cope with declining memory, like doing something immediately when I remember. I recently read a book called "Chronic Fatigue Syndrome and ME" by Dr Sarah Myhill. It has a lot of interesting information in it. Nearly all of us get some fatigue as we get older and there are ways of managing it. I am also on a journey to find a cure for ET, it is out there somewhere.
I am currently looking into the effects of electromagnetic radiation and ways to protect myself against it. This may even mean that I have to re-wire my house, well, it needs it.
Thank you for sharing!
I was looking for books on how to improve one's memory on Amazon. Like everything else, if you do not use it, you lose it.
Yes, that is the hope for us all. From the et (vascular disease) I have a deficiency in the frontal lobe of my brain. It effects my working memory, as when I am using it and the working memory is deleted. I need to start the work over. The part of the brain that handles these duties of working memory is call the Executive Function. Or in my case the executive dysfunction. I can use it and lose it. Thanks.
I can not calculate a thought. I will be 60 Sunday. I have to laugh at my self.
Just want you to know that I have had those aches and pains for years and until I was diagnosed in March this year with ET, JAK2+, I was told everything from 'it's all in your mind' to 'it's your nervous system overloaded due to stress'. Now I know that I do not have fibromyalgia (another guess by consultants & doctors) and I do not need to take debilitating drugs for an incorrect diagnosis.
I've had this for at least 6 years and possibly longer. The pain management clinic lost their rag with me because they didn't believe I couldn't do the exercises they gave m because they caused more pain with the gentlest of exercises. Exercises I couldn't even feel when doing them but causing excruciating head and neck pain. It's incredible to be in the position i now find myself and to be content just knowing the reasons. I don't concern myself with trying to find a remedy for the pain. I drink my water 'like a good girl' and try my best to follow an anti-inflammatory diet and walk as much as I can. In my mind I have returned to my yoga regime.....in reality I am still trying to kick myself into it. They call them 'flu-like systems don't they? A slight understatement I think.
I just want you to know you are not alone. Stay positive as much as possible. We are so lucky there is medication and support available. Love and Hugs. xxx
Yes. All in my head was said to me also. Along with other comments. Doctors can not even apologize after they way they treated me. I am so sorry you have gone through the same. Thank you for sharing and the hug too!
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