Newly Diagnosed CLL Patients: Do you struggle with symptoms?

Welcome @dmiles. I moved your post to the Blood Cancers & Disorders Support Group here https://connect.mayoclinic.org/group/blood-cancers-disorders/

I'm tagging fellow CLL-ers like @tinagibson @ssid @harrybare @mena2020 @alanahawaii @hababeck @carl50 @kegraves @4romeosierra @suez3 @mabfp3 @skycountry @minnesotajim @tlb to bring them into this discussion.

Dmiles, can you share what type of symptoms you're experiencing?

I am newly diagnosed and confirmed with blood work. I show zero symptoms beyond the high white cell count. Im not accustomed to being sick and feeling perfectly healthy.

I am 0-1 and I have horrible sweats and find it hard to keep weight on. I am also fatigued, but my WBC’s are only 19

Posted by dmiles @dmiles, I have 9 rare disease (few since birth), I Just have symptoms overlapping symptoms and need to know PV and MF symptom vs the stuff I have. There is NOT magic, "symptom chart". We are all different and experience things differently. How do you know you don't have other underline disease you don't know about and never diagnosed? My PV was skip over for years, passed off as other things. Hematologist went over few questions (next have list of what PV symptom vs other symptoms.... (I've spent days researching PV)
Y/ N Headaches
Y/ N Feeling Hot/ Sweating
Y/ N Night Sweats
Y/ N Ringing in the ears
Y/ N Blurred vision or blind spots
Y./ N Dizziness or vertigo
Y/ N Reddish or purplish skin (bruising)
Y/ N Unexpected weight loss
Y/ N Bleeding or clotting
Y/ N Early feeling of fullness (satiety)
Y/ N Itching (pruritus), especially after taking a shower
Y/ N Burning and redness of the hands or feet
Y/ N Tiredness (fatigue)
Y/ N Bone pain
Y/ N Large spleen/ liver
Y/ N High Blood pressure
Y/ N Iron regulatory of weight gain or weight loss
Watch for signs;
97% Y/ N Extreme exhaustion (fatigue)
75% Y/ N Insomnia
65% Y/ N Depression
65% Y/ N Abdominal Pain/ spleen size, abdominal discomfort, bloating (feeling full)
59% Y/ N Inactive
56% Y/ N Night Sweats or Day Sweats (Feeling Hot)
53% Y/ N Dizziness and headaches
51% Y/ N Inflammation
64% Y/ N Contraction / Memory Issues (foggy)
52% Y/ N Restless leg symptoms
50% Y/ N Severe Bone or Joint Pain
48% Y/ N Breathing difficulty and Cough
47% Y/ N Craving weird foods
46% Y/ N Chewing and craving ice
46% Y/ N Acid reflux and heartburn
48% Y/ N Weight loss
40% Y/ N Fevers
39% Y/ N Pale Skin Color/ Anemia
38% Y/ N Muscles weakness or muscles soreness
37% Y/ N Chronic infections
30% Y/ N Numbness and tingling
28% Y/ N Inability to keep warm (poor iron absorption and oxygen levels).
35% Y/ N Overlapping symptoms of other Medical conditions
eight Mass:
(Normal weight = less symptoms) Lower/ Higher weightmass = more symptoms
Woman will have more symptoms than men
56% Men are diagnosed with PV then woman
Yoga and Mediation (less sweating and less painful then excise)
Recommended Diets: Anti-inflammatory food list
Severe symptoms shows disease progression
Overproduction of blood will produce produces more symptoms
anyway going to give this to my doctor; hoping he can understand my symptoms better

All my sons cbc last year show all high fighter cells and platelets. It’s a mystery to docs. He lost 20lbs in a month. Flu like symptoms is exercise intolerant per his physical therapist. He has Chiari 1(if that helps) I’m thinking an autoimmune disorder?

What is your diagnosis? Hugs

Reply by @missypurtee THANK YOU FOR YOUR LOVE AND CONCERN; 1.Cold Induced urticaria, 2. Cold Anaphylaxis shock, 3. Cold Induced Asthma, 4. Chronic Bronchitis / pneumonia in winter months (3-5 times on antibiotic winter months or 6 months on antibiotics - since high school) 2016 Moved to Florida Jan- Feb is hardest months less antibiotic. 5 HAE ANGIOEDEMA , 6 (hypothalamus disorder) (broken hypothalamus; never run a fever, don't get thirst (feel hunger) temperature is mix-up and can't get warm without "heater" My signals are kris-kross miss-up, ect High blood pressure 109/70-250/159 swings ; 7. 3- HBP doesn't work (too cold over 200/120 and now heat / humidity is the same 200/120 LOL! Heat doesn't make me vomit like getting cold - 8. (2022 Polycythmia, 9 myelofibrosis which is type of leukemia and anemia (always had high iron) NOPE: NOT on SSI and never had a job for few months (got cold and passed out at work) home hospital study with nurses ... I told my doctor I only collect rare diagnosis and can't have cancer; it's not rare enough

Reply by @missypurtee i hope you find answers; not knowing is the worst
love X hugs X prayers X keep your smile and faith X cheering you on

My son has issues with cold, he can’t regulate it. He has many other issues due to chiari 1 malformation. I’m so sorry ur suffering so much. I hope you can find some relief

We suffer more when people just don't understand (support is miracle from earthly and heavenly angles. When I suffer I have warm sisters heart to help comfort me and it's a only way I can keep going. Summers are freedom except for air conditioning or fridge ... feeling cold is the worst! I love heat and never complain about heat missypurtee | @missypurtee glad your son understands me, that is rare! Thank you!