Reply To: SCT

May 11, 2017 at 4:35 pm

I have been revisiting the SCT recently. I was diagnosed with CIDP 6 years ago. I am doing really good on IVIG but worried I will get worse or stop responding to the IVIG in the future. So I want to stop this disease in its tracks. But I am also afraid to take such drastic steps since I am stable and doing so well. My neurologist said I should not as it is a very drastic step and there are risks involved. But my take is that why wait until I am sick and have irreversible nerve and axon damage to take drastic steps. Why not try and stop the progression now before I get to that point. I take risks every time i get IVIG… it is a blood product. But my real problem is that I am the bread-winner in the family. I just don’t see how i could take 3 months off my job. Even with short term disability payments they would not cover bills. Plus, I work for a small company of 12 people. I think if i needed to be gone 3 months I would be replaced. My company can’t function for 3 months without someone in my position. So my hands are tied even if I was able to afford or have insurance cover the costs. I don’t see anyway to make it work. So I guess I will have to sit and wait and hope that SCT comes to be a viable treatment in the near future and that it is done at the University of Minnesota so I would not have to be away from home for so long. I could work part-time throughout the procedure via the internet if it was here in MN. I am just so torn at this time.