This Is MS Multiple Sclerosis Knowledge & Support Community

Rod and Sandy were some folks who did the HiCy as well...Here is an email I received from them last night:

"We just did the 3 month follow up. No active lesions. Went from 12 seconds walking with cane to 6 with out cane, 4 is an average time for a healthy person. Most of the spasticity is gone just her feet are still numb and stiff. She got a 59 out of 60 on the number memory test. Which is up from 52 out of 60 prior to Hi CY. We are in a much better place since the treatment.

Rod"

Amen...I hope they didn't mind me showing them off!

She, not her hubby, sent us an email about 15 minutes ago.

Hi Chenell,

This is Sandy. Just wanted to correct a few of Rod's statements. Yes, I did the walk test in about 6 seconds without the cane. However, my spasticity is still pretty bad in my legs and my gait is certainly recognizable as that MS gait. I am doing much better, but I still can't walk very far. I have my better days and those that taunt me a little more with the remnants of this monster. Still, I don't think Dr. Kerr expected quite this much improvement in someone with SPMS, who has had this disease for over 22 years, in 3 months.

Sandy

I thought they didn't take anyone with SPMS. My husband has had MS for over 30 years. From what I have read on this forum others were rejected because they were SPMS. Can anyone explain? I want to keep as up-to-date as I can on this treatment as a possibility for my husband.

I checked in here and wanted to further qualify my situation. My MS was a mixed bag. Until about 2 years ago, I had been in a complete remission for 15 years (no attacks or new lesions). I was either pregnant or nursing for 5 1/2 years until 2006. Nursing was the best for my MS. I didn't know, at the time, that prolactin was one of the few things found in studies to regenerate myelin. After I weaned I took a dramatic and unrelenting downhill spiral. I went from perfectly normal to shaking violently, not being able to bathe myself at times, etc., etc., etc...I tried all the FDA approved CRAB's and well as diets, LDN, SF 1019, the drug that Alan Osmond is on with great success, and nothing helped. I believe I was 6 months away from a nursing home.

At the same time that my MS became very active, in terms of enhancing lesions, I also become progressive. I was a definitely secondary progressive, but I continued to have some enhancing lesions on my MRI's and because of this, I still qualified for the Revimmune. It has always been strange to me that I didn't become SPMS until my disease once again became active.

Sandy

Congratulations, Sandy, on your success with cyclophosphamide. I'm very happy for you.