Hi @altabiznet My goodness, you’re certainly having more than your share of medical experiences! @becsbuddy tagged me into the conversation as the mentor for the Bone Marrow/Stem cell transplantation support group. I’ve read through a number of your replies to see you’ve had an autologous stem cell transplant, ASCT, using your own cells. This was done in an effort treat your autoimmune disease, scleroderma. ASCTs are really finding a footing in helping to reverse many autoimmune complications.

But I’m really sorry to hear that you’re having continued neurological issues along with fatigue. While it’s pretty common for fatigue to hang around for a couple of months post transplant, recovery from an ASCT generally improves rather steadily. What do your blood numbers look like? Has your red blood count/hemoglobin returned to normal?

The neurological issues are really troubling. Initially most chemo will cause a little peripheral damage with possible brainfog, neuropathy in the legs, feet, sometimes hands. But from my own experience, those symptoms seemed to slowly pass within several months.
I will share that I had an Allogenic stem cell transplant, using matched unrelated donor cells (MUD) for acute myeloid leukemia almost 7 years ago. Six months post transplant I developed odd sensations in my legs and butt. It started in the ‘saddle area’ of my body, spreading to my legs and feet. I ended up losing all sensation from my waist to my toes and was rushed back to Mayo.
Testing showed that I was having an atypical graft vs host disease reaction. The new immune system with its aggressive stem cells were attacking my spinal cord. Various tests were done, including lumbar puncture, 3 hour MRI (most fun) and neurological tests. Results showed severe inflammation on my spinal cord eroding the myelin sheathing. I was put on 1000 ml IV steroids daily for 3 days until my liver balked at that. Then lowered to 500 ml daily for several more days. Back home at my infusion center I received 500ml twice weekly, tapering over 9 months.
I also had 4 infusions of Rituximab the first month! The inflammation on my spinal cord was due to an attack by B-cells. Rituximab is a strong anti-inflammatory drug used for calming B-Cell reactions. That was 6 years ago and I’ve not had another attack. It was a miracle drug for me.

Because you had a transplant using your own cells, you won’t have GVHD issues. I only mentioned my experience because in one of your other replies in the forum you had said your doctor is considering Rituximab treatments. From my personal encounter with the drug, it was fantastic! I had no side effects except with the initial drip. And that is very common! I was told to expect a reaction but that the infusion teams are prepared for that with steroids and Benadryl that get dripped into the IV. Worked like a charm.

Have your doctors determined the culprit behind your neurological symptoms? Has there been a lumbar puncture or MRIs of your spine/brain to see if there is inflammation or demyelination of your spinal cord?