Jennie's MS Journey

Today has been busy so far. Woke up bright and early for bloodwork and an EKG at 6am, followed by a short walk around the floor and then got started. Im feeling ok from the infusion yesterday so they started me on a continuous iv of chemo and rATG that will run continuously until Tuesday. Looks like I’ll be getting wild and showering tandem with my pole for the rest of the week. He better be respectful;).

The chemo is about the same as before. I have a headache and a weird sensation in my nose that they call wasabi nose. I feel impaired a bit cognitively from the drugs.  It usually goes away as the chemo tapers and the post meds clear it up. They may add in something tomorrow to help.

My nurses Regan and Matt have taken really good care of me. They are very kind and try to help us be as comfortable as you can be, I appreciate that. Matt (other matt) also has been getting me anything I need and trying to get work done in this loud hospital room isn’t easy!

Despite this being hard and being away from the kids, I’m learning each day here how incredibly lucky I am. I have spoken to the others on the floor and they are all fighting for their lives and their children. One man has ALS and is getting the transplant after years of trying everything else. He has kids at home and is just trying to keep living as long as possible for them. Another guy has myeloma and had been here 38 days waiting to engraft. He wasn’t giving up, he was showing me how you can still workout etc. The other MS patients are very sick in the midst of this process but their rooms are full of love and this is the first time since their diagnosis that they see a possible beacon of hope not to further progress. Many are already in wheelchairs and so this is a chance for them to walk again unaided and I cannot wait to keep in touch and find out if they achieve mobility. Last week a woman came in here on a wheelchair and walked out 3 weeks later unassisted. It’s truly remarkable seeing it in person and I have first hand seen these results. I wish neurologists would more readily share this data so people have choices. Without being your own advocate or hearing it from clinical data/press, you could miss out on something that could really change the trajectory of your disease. Maybe never relapse again. It’s not for everyone but it should be considered option.

If you know someone with aggressive/spinal MS disease that is still RRMS, it never hurts to explore this treatment at with DR. Richard Burt at Northwestern. He also treats Scleradoma, Lupus, Stiff Persons Disease, Graves, CIPD. Autoimmune disorders respond to rebooting the immune system.