VF Disease Spotlight: Steph's Story about living with Cryo

Introducing Steph Lee 0:02
How it started. Early symptoms. 1:45
Extreme fatigue that wasn’t normal. 2:48
Failed a test at the hospital. 4:00
Sensory, neurological symptoms grew worse. 5:15
I was told to see a psychologist. 5:37
Prednisone: Back to myself in three days. 6:23
Started taking Rituximab. 8:05
We’ve been looking for horses. Now it’s time to look for zebras.” 10:09
Neurologist: “There’s one type of vasculitis they didn’t check you for….” 12:21
Coping strategies with Cryo. 13:55
Adjusting my mental attitude. 14:28
Coping with the cold. Staying warm with cryo. 16:29
Why it’s a big decision where patients with Cryo choose to live. 17:57
Always need extra clothing to stay warm. 20:24
Surviving winters in Minnesota with heated clothing. 22:13

[@captainhml3868]

I really enjoy these videos. Please do one on Anti-GBM/Goodpasture's Syndrome. I have GPA AND Goodpasture's Syndrome.

[@kempenaar32]

Very similar story here

[@iamstephly]

So sorry to hear that @Kempenaar32. :( I hope things are getting better for you and a diagnosis has led to a treatment that's improving your quality of life.

[@kempenaar32]

@@iamstephly The long term Prednisone caused me to balloon up, which made a lot of other things worse. Thaught I was dying. Serious breathing problems. I got bariatric surgery. That actually improved things dramatically. Surprisingly, improvement started about a month before the surgery when I was on a strict diet to prep for the surgery. In hindsight, I think reducing carbs and glutens in particular, sugar and increasing proteins had a dramatic improvement. It is now gradually deteriorating again. Probably because I have been relapsing on glutens. Also, COVID gave me a mild long COVID (foggy brain, balance issues) which is slowly resolving. Long story short: Cut gluten and sugar from your diet and see if it improves.

[@iamstephly]

@@kempenaar32 Thanks for the tip kempenaar32 and sorry to hear about the symptoms popping up again. The up and downs of the disease can be hard to deal with mentally and physically. :( And extra sorry to hear about the prednisone. I gained 70 lbs when I was on it and felt so awful from it!!! --_Steph

[@mail2vw]

Hi steph What was the blood test you talked about in the video (with false positives) they did to diagnose your cryo?

[@iamstephly]

Hi @Mail2vw! Thanks for watching. :) The blood test the neurologist first told me was a false positive was the cryoglobulins test. (Which you really only hear about false negatives with it so I'm not sure if you can get a false positive?) ---Steph