What symptoms or complications have you had beca... - Fight MPN
What symptoms or complications have you had because of your MPN?
Please select all that apply:
dizziness, confusion, short-term memory loss, depression, anxiety, vision disturbances, pain in arms and legs, bloating
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
Splenectomy, Portal Vein clot, DVT...
Itching
Unable to tolerate warm/ hot weather
Migraines, dizziness (not sure if they are def related to pv)
Red face / hot flushes
Heat intolerance very severe.
Bruises, loss of hair, loss of appetite, weekly transfusion dependent, heat intolerance, petichiae, hematoma in mouth.
Bone and joint pain, ulcers in mouth, dizziness, depression, anxiety, loss of hearing
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! 🙄
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.
Sorry. I should've added that I have ET jak2+
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.
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.
Itching