Walking with MS after Novantrone

This is how my walking has stabilized -and slightly improved- since starting Novantrone (chemo) last summer. I've had 3 doses so far. Right before starting the chemo I had deteriorated to the point where I couldn't even briefly stand upright without support. To even get a glass of water from the sink I had to be seated or lean very heavily on the kitchen counter (and sometimes still tip over). Now, on good days when well rested, I can briefly stand without holding onto something for balance, as well as try to take a few small steps before grabbing onto something for support! Eight months ago, I couldn't have imagined walking this well again! I'm back to how I was doing about a year ago.
I was diagnosed 4.5 years ago and have been secondary progressive for a while. I'm 30 years old, married to a great guy and we have 2 kids - ages 3yrs old & 20mo old. In addition to novantrone, I'm also on copaxone, baclofen, ditropan, colace, and vicodin (for unrelated spinal probs). In addition to MS, I also have a spinal fusion T4-L4 for scoliosis, and I've developed flatback (fixed sagittal imbalance), most likely requiring spinal revision surgery in the near future. I'm standing fairly upright in the video because my knees are bent the whole time. If I lock/straighten my legs, I will lean much further forward (thus making it harder to balance) due to the flatback.
Novantrone is a chemotherapy and has some very serious risks. Not everyone has such marked results. For me, the benefits so far have outweighed the risks.

Category:

People & Blogs

Tags:

• multiple
• sclerosis
• MS
• walking
• novantrone
• walk
• mitoxantrone
• copaxone
• walker
• rollator
• secondary
• progressive
• SPMS
• gait

[angelafreedman21]

While Novantrone (Mitoxantrone) may have had positive results in this patient, please keep in mind that this is a GLOBAL immune suppressant. This intervention has many potential long term side effects. It would be better to use stem cell therapy such as what Cellmedicine is doing.

[retto76]

Prior to any SCT, a person's immune system must first be wiped out using CHEMOTHERAPY! Please look up the methods on cellmedicine's own webpage-they use cyclophosphamide (Cytoxan), along with many other drugs. Cytoxan is also a GLOBAL immune suppressant, with many potential long term side effects, not to mention side effects of the other meds involved w/SCT. I myself believe in the promise of stem cell therapies,but please don't try to imply that treatment with Novantrone is MORE risky than SCT.

[les4choupaschweppes]

My mom has MS and when I was nine she was diagnosed with Breast Cancer...Went through many chemo's and after a year in bed she was back learning how to walk!! Now she is awesome and exersising 1 a week!! now i am 12 and hopeing nothing elese goes wrong!!

[JesusSk8z]

what a brave women,,,

[Call1800POO]

Thanks for posting.

I am trying to find some device to assist my walking, and you presentation has helped my search.

Cheers.

from,

del-boy.

[mebeki]

Hi! I've had MS myself for seven years now, with symptoms like numbness in my legs, arms, and torso, loss of vision (almost completely, but it's back for the most part now), and I eventually wound up in a wheelchair. I've been getting Novantrone now for a while, and although it's not perfect, I'm walking relatively well now. You really reminded me of the past months for me. Keep it up!! You're doing so well!! :)

[karena321]

Hi! I was going through my subers 2day, & noticed your name, so I clicked it 2 meet U. I'm not familiar with any meds, per se, bcause every one the neuro gave me, made me sleepy,& I couldn't function, so I never really took any. 4-10-07, I started with chelation therapy, which seems 2 slowly, but surely help me. Even tho I don't have ALL vids up, I aM DOCUMENTING;the worse, nt up yet.U R doing GRT!Hpe 2 talk 2 U later!!Last yr, I had a fall which gave me mch pain & set back, so I'm wkN on it!LTR

[6508396]

I had a Neurologist who didn't care about long-term side effects. He wanted me to have a good quality of life right now. I say if it works now and you feel good keep using it. Your an inspiration to us all!!!

[TAJAPR]

It looks like you have made some definite improvements upon your mobility. Congratulations and keep up the good work.