Anyone experiencing tremors, possibly related to their MPN?

[blu3yedblonde]

Diagnosed w/covid 3/26, spent a week in ICU and I’m still recovering. My Jak2 MF labs have remained XLNT. Upon release from hospital, I started having tremors, worsening daily. Neuro doesn’t think it’s a covid thing but possibly MF related. This a.m. I was shaking from the neck down to my toes, like seizure. I was very frightened!

[socrates_8]

Hey blu3yedblonde...

Wow, that sounds like a very interesting moment in your MF journey too... (Having caught CV-19), & now having to try to differentiate between your MF symptoms, & whatever you are experiencing now, as well...

Glad to hear that you are receiving the very best care & hopefully being very closely monitored by your MPN Specialist as you are travelling this part of your journey etc...

Very easy to understand why you might be feeling a tad apprehensive...

Stay positive & strong & please do keep us Posted...

Best wishes

Steve

[blu3yedblonde in reply to socrates_8]

I appreciate that! I’m doing my best. Feel like I have ptsd from this experience, however, I have a psychologist, oncologist, neurologist, and gen med doctor, on my team!

[socrates_8 in reply to blu3yedblonde]

Sounds like you are in very good hands...

You've certainly been through a rather tough & nasty ordeal...

Stay strong & positive & keep us in the loop... Sharing and talking w/ others, I find is often like listening to yourself thinking out loud... It helps to have a clearer perspective too...

Best wishes

Steve

[blu3yedblonde in reply to socrates_8]

I’m definitely happy to have finally become somewhat interactive on here. You’re right, talking with y’all is definitely helping!

Mahalo 🤙🏽

[Kiki64]

Hello ,Hope you feel better soon .

Kiki64

[blu3yedblonde]

Mahalo~

[Kari1961]

Hi blu3yedblonde

I was diagnosed with Essential Tremor many years ago by a Neurologist. I have PV Jak2+ and had a stroke (CVA) in 2012 - I can't make comment on it being MF related.

Essential Tremor can affect any part of the body - I tend to have it only in my hands, it never goes away, but does get a lot worse when I'm stressed. It can be very debilitating, but I've learned coping techniques to try to ease it - I use mindfulness techniques, and it really helps.

I've recently read that PTSD, Post-traumatic stress disorder, anxiety, and depression, are strongly associated with essential tremor, so it could well be the cause of yours after going through such a tough time.

Stay well. Kari.

[Arty16]

I have ET and was diagnosed with essential tremour. Which I have in my right arm. Had a brain scan they said everything was normal so I had essential tremour. I take meds and it it under control but if stressed can get mild symptoms

[blu3yedblonde in reply to Arty16]

You have ET and et... I’m having a brain scan in June. Going to pick up propanolol today.Mahalo~

[CalrType1 in reply to blu3yedblonde]

Yep. That’s correct. The MPN ET is terrible. The tremor et requires no meds as of yet. GL!

[Arty16 in reply to blu3yedblonde]

That was the meds I was on. I have managed to reduce dose now. But know I can increase when required

[Wyebird]

Oh no that’s frightening. Has it subsided. If it starts again I would defo go to a and e- if you dare. Sending hugs x

[blu3yedblonde in reply to Wyebird]

Working with my neurologist. Never dreamed I end up with psychiatrist, oncologist, and neurologist taking care of me! Hugs to you too!

[CalrType1]

Yes, diagnosed with essential tremor first, then essential thrombocytosis. I was told they are related. It’s my hands that get tremors. No covid-19. GL!

[blu3yedblonde in reply to CalrType1]

We’re all in this together, one way or another! Aloha~

[Pte82]

blu3yedblonde, look over this information about thiamine and tremors. Thiamine is a component needed for many functions but is often at a deficiency as certain food products such as raw fish, and shellfish, contain thiaminases - enzymes that destroy thiamine. For more information about thiaminases search on " Thiaminases and other Antithiamin Factors." Large quantities of tea, coffee interfere with it's absorption too. ,The thiamine forms sulbutiamine and TTFD are efficient passing through the blood/brain barrier. Magnesium is a component needed to convert thiamine to it's active form. It too is often found to be deficient in the diet The krispin link contains information showing causes for loss of magnesium. Loud noise, heat and stress are among those listed. Also found there are forms of magnesium and a calculation for daily needs. Magnesium L-threonate is a form that can pass the blood brain barrier and can be included with other forms in calculating daily elemental magnesium. Boron increases magnesium absorption. Search on "nothing boring about boron" for more info. These supplements may offer relief or may complement clinical treatment as discussed in the first link. I hope these links offer options to discuss with your health care team. Always consult your health care professional before using any supplement.

ncbi.nlm.nih.gov/pmc/articl...

essentialtremortreatment.co...

eonutrition.co.uk/post/mega...

krispin.com/magnes.html

[blu3yedblonde in reply to Pte82]

Thank you so much!

[Mazcd Partner MPNVoice]

Hi blu3yedblonde, I am sorry that you are experiencing this, it does sound very frightening, I hope it gets sorted out soon and they go away. Best wishes, Maz

[blu3yedblonde in reply to Mazcd]

Mahalo~ Maz 🤙🏽

[Reggieru]

HiSorry you are having problems.

Have you tried magnesium supplements?

I had the same thing, tremor in my hands that progressed until I felt like there was a mobile phone on vibrate going mad in my torso. After a lot of research online found that ET patients often have a deficiency, hydroxycarbamide even has a small dose included in the capsule.

I only took the supplement for a week before it eased and now take it daily.

I hope this is of some help.

Best of luck.

[blu3yedblonde in reply to Reggieru]

I appreciate you responding! I have been taking magnesium for a few years. Neurologist has now ordered propanolol and I’m praying that will help.