Dan, thank you so much for telling your story. This disease is so tricky to diagnose and I think a lot of people are never diagnosed properly. It's nice to share similar stories about this journey we are on. Stay strong and good luck with the new pacemaker.

Your videos have encouraged me to keep pursuing answers for my symptoms. God bless you for sharing your story and giving hope to never give up!

You are a great man with lots of optimism and positive energy!

@amyloidosismyjourneytosucc4995

4 жыл бұрын

Thank you Ronnie

Thank you for posting. Your 4+ minute video brings so many thoughts and experiences from my journey to my mind. I've felt the void in the pit of your stomach when you have no idea what tomorrow will bring. And the relief when someone begins to have answers and finally at least there is a path forward. Thank you for expressing these feelings much more eloquently than I have been able to. 💛

@amyloidosismyjourneytosucc4995

4 жыл бұрын

You're welcome Julie. I think it's a feeling we've all had... it's hard to explain to others or have others relate to the feeling.

God bless you and keep you💖

@amyloidosismyjourneytosucc4995

4 жыл бұрын

Thank you Maria!

Are you still in vegas? Just diagnosed w AL alymoidosis. Seeing cardiologists next week and hopefully starting tratment soon. Wish me luck🤙🏽

@DanLier

6 ай бұрын

yes, still in Vegas... and doing well! Yes, please keep me posted.

@keliikiakona1446

6 ай бұрын

@@DanLier how long ago were you diagnosed? I will start chemo next month...

I so sympathize, those trips to the ER and night of breathlessness are hell on earth, I was in that place before I was treated for my condition too. My doctor at Mayo Clinic saved my life.

@amyloidosismyjourneytosucc4995

4 жыл бұрын

Wow, fantastic. Who was your Dr at Mayo?

@kms386

4 жыл бұрын

@@amyloidosismyjourneytosucc4995 My Dr is Dr Goodman. He is an autonomic neurologist who deals with autonomic dysfunction and has a special focus in autoimmune causes.

Ok bro everytime i go to sleep my dreams is insane dude like im fighting with a kid thats at my age i just telecines them i just fly them away like they disappeared and sometimes im in world war with the germans and sometimes i just fly with some people and when im sleeping and im paralysed in my dream i would look around and see a demon smiling for no reason and my body feels weird and then im not paralyzed anymore i just beat the shit out the demon the demon runs away for no hell reason i just have a rpg in my pocket like how does it even fit in there and sometimes i dream driving a tank or having the things that i wanted or losing things like sometimes its to blurry i cant see normally but one dream i will never ever forget is that when it was the time for school i fell back to sleep and i remember everything i told the people what was the time in reality and this is a dream and say that this thing is fake and what was coming sometimes i was in hell i was burning cant see or breathe move i couldnt even scream or talk and felling weird things and i will be stuck forever and one night since i was younger i dreamed about slendrina i was in a house alone and there was four ways to go so i got in the way and i heard something that was a sound it was slendrina when i looked back and i runned faster than my grandma falling down the stairs then when i looked back slendrina was in my face like freddy fazbear she stabbed me and i waked up and i screamed so loud i could’ve even break the sound barrier and i explained everything and one night i waked up in the middle of the night i got to the door beans with blood came out of my mouth and nose i dont know why this happen i didnt really liked beans and one of the most crazy thing is that when i was young i would splash water or the electric wires for fun or the neighbors electricity wire and when i was young i eated so much salt i throwed up in the hallway to the outside in my dreams damn dude i have to fight for my life dude(so thanks for reading and you made me happy!)

Do you have a video of your symptoms prior to diagnosis?

@DanLier

3 жыл бұрын

No... just stared videoing after diagnosis. Weigh loss, weakness, fat loss, a-fib. I really didn't know how bad i was looking until I attended a charity event run by one of by friends who is a leukemia survivor... he said to me with concern... are you ok?

@bobbycannon3571

3 жыл бұрын

@@DanLier thank you for your reply! did you have anything like orthostatic intolerance such a POTS or Dysautonomia any GI issues 15-30 minutes after eating? when you mention weakness are we talking muscle strength or just fatigue? cloudy/turbid urine or Episcleritis (red eye)?

@DanLier

3 жыл бұрын

@@bobbycannon3571 None of those you listed.... weakness, both muscle strength and fatigue.

@bobbycannon3571

3 жыл бұрын

@@DanLier ok thank you for clearing some info up for me. I appreciate you taking the time out of your day. I hope you are doing ok. Thank you for videoing your journey and helping others!

I am understand what happened too you cause i have a patient with cardiac amyloidosis.. But you didn't tell us about treatment period with doctor morie gertz.. Can you tell us more about it

@DanLier

4 жыл бұрын

Yes, did 3 types of chemo for a period of two years. My light chain proteins went from 16 to 2.5, then I went to a maintenance drug called Venclexta.

@qaqaization

4 жыл бұрын

@@DanLier i think you diagnosed with lemphoma and amyloidosis.. So not meyloma with amyloidosis.. Is I'm right

@thejass6466

3 жыл бұрын

@@qaqaization my dad is diagnosed with myloma with amyloidodis

@qaqaization

3 жыл бұрын

@@thejass6466 same my sister.. You should try mayo clinic doctor morie gertz