What symptoms or complications have you had beca... - Fight MPN

Fight MPN

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What symptoms or complications have you had because of your MPN?

tclementi profile imagetclementi19 Voters

Please select all that apply:

14 Replies
digijools profile image
digijools

dizziness, confusion, short-term memory loss, depression, anxiety, vision disturbances, pain in arms and legs, bloating

EileenMcL profile image
EileenMcL

Also silent migranes/ocular flash visual disruption and thrombosis. Provided side effects associated with ET, not those experienced with treatment.

I have no symptoms for my ET

Bobbirobin profile image
Bobbirobin

Splenectomy, Portal Vein clot, DVT...

Pauline43 profile image
Pauline43

Itching

Unable to tolerate warm/ hot weather

Migraines, dizziness (not sure if they are def related to pv)

Red face / hot flushes

Kinsalelady profile image
Kinsalelady

Heat intolerance very severe.

abominable profile image
abominable

Bruises, loss of hair, loss of appetite, weekly transfusion dependent, heat intolerance, petichiae, hematoma in mouth.

Jplsuper profile image
Jplsuper

Bone and joint pain, ulcers in mouth, dizziness, depression, anxiety, loss of hearing

pollyprissypants profile image
pollyprissypants

Also- Erythromelalgia in feet, hands and face. Pruritus (mild). Migraine with visual aura. TIA's- loss of function in right hand and fingers, tingling and numbness in the same areas. Loss of speech and ability to form words. Debilitating fatigue. Rapid vision changes over the past year. 💦 SWEATING day and night, BONE PAIN and general aching and pain throughout body. What a champion of a disease! 🙄

katiewalsh profile image
katiewalsh

Multiple blood clots causing "probable TIA", spleen infarct and almost dying from multiple PE's that so damaged my lungs I now have to use oxygen when I sleep and my pulmonary function is permanently impaired. And slightly enlarged spleen.

I don't know if these are related to my MPN: Heat intolerance (exhaustion if in high heat & humidity for even a short time), getting chilled easily in air conditioning, random (unexplainable) and extremely rare episodes of exhaustion.

I think it would be helpful for me if people indicated their diagnosis. That would enable us to see if there are common threads. I believe there are major differences among the three main MPNS.

katiewalsh profile image
katiewalsh in reply to katiewalsh

Sorry. I should've added that I have ET jak2+

Yallcome2 profile image
Yallcome2

Also experience breathlessness, night sweats & shaking. I have Myelofibrosis (Jak2) & auto immune hemolytic anemia. Currently taking Jakafi 10mg, after a great deal of dosage adjustment due to low platelets.

Litefootes profile image
Litefootes

The deep bone ache from head to toe is probably the most painful symptom I have from PV. Thankfully, I usually only have this symptom leading up to a phlebotomy. Within 3 days after a phlebotomy that sensation is usually gone. When you combine this with the weariness, it is a miserable time.

Strawb5 profile image
Strawb5

Itching