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ActiveMSers 04-17-2013 01:16 PM

Official Year 3 Update
I just returned from my 3-year check-up in Houston. Before I detail the results of my autologous (own) stem cell transplant at year three, I want to remind folks: 1) the purpose of HALT-MS is to stop disease progression, not reverse damage, 2) my experience may not be representative of all study participants, 3) HALT-MS included two major components: stem cell transplant and immune system ablation, meaning that one aspect or both could be responsible for my gains, and 4) MS is a disease that is unpredictable, so my gains could also, in theory, just be natural remitting.

Disease activity. Officially stable MRI once again. I have had no relapses (after having several relapses in the nine months prior to the SCT). I continue to take no MS medication. In fact, no one treated at the Texas site has restarted any MS medications and all have seen improvements.

Walking ability. At year three, for the official test I logged over 500 meters again. My walking speed, tested over 25 feet, is about the same as it has been. While I use forearm crutches outside the home, I am using a single cane or zero aids inside. I often cook without aid and even carry baskets of laundry without walking assistance. I don't know if that is smart, however.

Dexterity. More improvements. The "peg" test times were in the 24-second range for my left hand and 25-second range for my right, a significant change from 28 seconds and the low 30s last year. Typing is much faster.

Cognitive. Tested with the PASAT (basically oral math), I duplicated last year's results. For background, I missed six questions at month six three at the one year mark, and only one at year two. I think I got excited toward the end once again and pooched one of the last numbers. I also have been doing the brain training games at Lumosity for the past year and rank in the 99th percentile for my age group, so missing even one makes me angry.

Fatigue. Still zero.

Balance. Again, this continues to surprise me. I often use no aid in the kitchen and chop/prep everything standing. Moving a pot of boiling water off the stove is not a problem. Lugging laundry to and from the bedroom is easy. I've had no falls.

Lower Body Strength. Aces. Going to the gym is helping.

Upper Body Strength. More aces and bigger muscles. Protein after exercising is helping in that department. My right side is still a smidge weaker than the left, but that might be from a prior shoulder injury.

Vision. 20/20 with glasses. Pretty much unchanged since month 6.

Bladder. About the same from last year. Urgency is a minor annoyance.

Numbness. For two years running, I've answered correctly the "is your toe up or down" test.

Overall. The doc said he bumped up my score again after my testing, so I bested last year's battery of tests.

My next series of tests will be at the four year mark. Immunizations are complete and I currently I am on zero daily prescription medications, same as last year. I take Viagra for complications from my low testosterone (although things work without such aid, just not as reliably) and pop the occasional half Ambien for sleep. Vitamin D (4000 IUs) is the only supplement I take.

So to sum up: More steady but gradual improvements. Nothing earthshattering, but noticeable nonetheless. Will my current gains hold? Will I see more gains by year 4? Fingers are always crossed.

As always I'll post more about further gains and any speed bumps as warranted.

teena marie 04-17-2013 06:53 PM

Amazing news. Thanks for the update.

Teena Marie

Sparky10 04-18-2013 06:08 PM

Good to hear, Dave!

tkotko 04-18-2013 11:55 PM

Great news, Dave! Thanks for inspirational update.

Irene 04-19-2013 12:46 AM

Wow, great news (and so clearly put). Good for you!

AMFADVENTURES 04-19-2013 11:30 AM

Fantastic news Dave! Any 'next steps' in the offing?

penkalet 04-23-2013 12:45 PM

Superb!! I am very happy for you.


ActiveMSers 04-25-2013 05:45 PM

Got the official MRI results three minutes ago. First I called Laura, and then I posted here. Totally stable!

sheri9 08-02-2013 02:44 PM

Dave, Need your Help
Dave, I am So Excited about your MRI!!! I am new to this site. Will give you a little background on myself. I am a female, 58 years old, have had MS since about 10 years old. I have been on Beta, Cop, Avonex, currently in trial for Gilenya.

HOWEVER, my big question to you is if you know of ANY clinicals that ate doing Stem cell transplants??? I am still walking, take multiple mess every day, nut the FATIGUE is destroying my life. (If you can call it a life!!!). Am desperate to find anyplace doing clinicals!!!

Can you help me, PLEASE???


ActiveMSers 08-05-2013 10:32 AM

Sheri, here is one in Texas that is currently recruiting (age cutoff 60). I don't know if you would qualify, but it is worth a look.

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