Go on…

Last year on December 18th I went swimming in the evening as I often do. This time, however, not four hours, but only 15 minutes. Then my circulation stopped and my toes hurt as if I had shards of glass stuck in the end joints. Of course I looked immediately and didn't see anything. I could barely stand and limped to bed.

The next morning my toes were discolored. Small red-purple bleeding. Okay, what kind of crap is this again? I was on duty and showed it to the rheumatologist. It's practical that you always have the right people at hand. “Phew, Sandra, that’s acrocyanosis. But that doesn't look good. Now please go down to the ambulance immediately and have your blood taken. Do you have any other complaints?”

Well, many. Tiredness for weeks, weakness especially in my legs, sometimes I can hardly lift my legs when running. I notice how everything is becoming more difficult for me, especially when working. I stumble, drop things. I can hardly prepare infusions because I notice how my fine motor skills are failing. But I'm covering it up. Maybe it's stress...I keep being asked about my weight. I would have lost so much weight again. You can see every bone.

It could be MS. But also lupus. Or Sjogren. Or just systemic scleroderma. Wow, nice selection. Great Christmas present.

The blood tests take time. Meanwhile my feet get stuck on speed bumps and I can't get out of bed in the morning because I'm so tired. Glasses fall out of my hand. I can barely hold a pen anymore. But I have to work... I grit my teeth. Nobody notices how much I suffer, including psychologically of course. I'm professional, I don't let people look into my soul at work. High doses of cortisone kept both the pain and the polyneuropathies under control, which had now completely affected both the arms and legs. By the way, I later had 10 kilos more on my hips in 3 months.

A few days later I asked our ward doctor if she knew anything. I notice that she is uncomfortable that she has to tell me this now. “Please let’s talk in peace for a moment! Your cryoglobulins are positive.” oh yeah, okay and? “Well Sandra, they are the type I cryos!” um, I don’t understand… “that means you should urgently go to hematology. It suggests something malignant in your blood.” OK, but is it certain? “Whatever is there is there. Like tumor cells. They just don't belong in your blood! But I won't leave you alone with this. I’ll write an email to the professor and point out the urgency.”

Although he was on a skiing holiday, he replied that I should come to him at the beginning of January. And then I was lying on the couch in the fetal position and he was aspirating blood and punching bone out of my pelvic bone. My first bone marrow biopsy.

What followed was a ping-pong of doctors, examinations and possible therapy options. Chemo, antibodies, stem cell transplant, dialysis. I chose the simplest solution for me, antibody therapy. Just didn't help. Later a kind of dialysis helped in the short term. There's not much left.

So, which diagnoses add up?

In addition to last year's morphea:

Secondary Raynaud's, vasculitis, cryoglobulinemia type I and a monoclonal gammopathy type IgM Kappa, possibly CHIP, possibly M. Waldenström,... it's a mystery.