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ActiveMSers 04-23-2015 05:19 PM

Official Year 4/5 Update
I recently returned from my 5-year check-up in Houston, my last official visit other than a final MRI, which happens in a couple weeks. Here are the results of my autologous (own) stem cell transplant at year five (and four; sorry, fell behind).

Disease activity. Officially stable MRI once again, with zero new or enhancing lesions. I have had no relapses (after having several relapses in the nine months prior to the SCT). However, I have had EDSS changes from year 3, when I was judged by researchers to be a rather optimistic 3.0 (I might have said a 4.0). In year 4 that ticked up to a 4.5, and for year 5 I added an extra half point to a 5.0. My score entering the study was 5.5, so I'm still above baseline, but not as dramatically as in years 1-3. Since my EDSS has risen, my neuros feel it is prudent to restart MS medication, which I hope to do in the coming month. For the record, I've been off all MS treatment for the past 5.5 years.

Walking ability. At year four, for the official test I logged 350 meters (previous highs were 500+). For year five, just 200 meters. My walking speed, tested over 25 feet, also dropped in year 4, and again in year 5 (I feel more dramatically). Unquestionably I am slower, which is a bummer. While I use forearm crutches outside the home, I still use a single cane inside. I am using a wheelchair more for distances, and am investigating a scooter for distances as well.

Dexterity. Stable. No noticeable losses.

Cognitive. Tested with the PASAT (basically oral math), I aced the test for the first time in year 4, getting a perfect score. Year 5 did not official measure cognitive skills, but I feel they are equal with no decline.

Fatigue. Still very low, but I have noticed a tad creeping in on rare days. But for someone with MS, I basically have nothing to complain about in this department, as it can be debilitating.

Balance. Hmm, not as dialed as it was in years 1-3. It's not crummy, but I have had a couple falls and I don't have quite as much confidence as I used to have.

Lower Body Strength. Actually, still okay. It's the endurance that is an issue.

Upper Body Strength. Good and holding steady.

Vision. 20/20 with glasses. Still unchanged since month 6.

Bladder. Unchanged. Urgency is a minor annoyance.

Numbness. It's taken a dip, which started in January 2014. That month I noticed my feet were a bit numb, which was one of the symptoms I was happy to have tamped down with HSCT. Alas the numb creep has spread. Not too bad, but definitely noticeable. I would fail the toe up/down test, as I did pretreatment.

Overall. I really can't be disappointed. The treatment saved my life and I am doing loads better than I was in January 2010 when I was cratering. I cannot begin to list all things I can do today that were impossible five years ago. Going back on treatment is something I'm cool with and am prepared for. Folks in our study are doing well, but it does appear the durability of HSCT diminishes over time, as the number of patients with zero MRI activity, relapses and disability progression drops as the years progress. That said, more than half are still NEDA (no evidence of disease progression), which is outstanding. While I wish I was in that group, such is life with this disease.

ActiveMSers 04-23-2015 05:21 PM

Oh, and my lung function is 130% above average, on par with pro athletes and horn blowers. I wish I could say that is due to my training routine, but the altitude in Albuquerque is a mile high. Still though, a great result. My bloodwork is also fine, except for a low testosterone number which I am already well aware of....

pushingForward 04-23-2015 06:41 PM

Glad to hear you are still doing relatively well Dave, and welcome back to the immuno-suppressed :(

Thought you (and others) may be interested in the post today from the Tisch MS Center and preliminary results of their stem cell trial -

ActiveMSers 04-27-2015 10:45 AM

Thanks PF!

teena marie 04-30-2015 05:46 PM

Dave, somehow I missed all the details. I understand how difficult the changes must be. I guess the whole picture is good and things don't sound rapid. Any idea which med?

Beaming you vibes and keep up your great work.

Teena Marie

GerlindeP 08-13-2015 03:24 PM

Dave, sorry to hear your EDSS score is slipping. I don't really understand the rationale of your neuros suggesting DMDs for you again since you don't have active inflammation going on according to your MRI? Did they elaborate one that?

ActiveMSers 08-17-2015 10:26 AM

GerlindeP, that's the million dollar question. I'm not terribly optimistic traditional DMDs are going to have a large effect on my MS at this stage. I think it is buying time (or creating the illusion of buying time) until something better comes up. I'll make a new post about the decision-making process in my case....

GerlindeP 08-19-2015 03:48 PM

I keep my fingers grossed that you find something that works for you. I'm sure you know about the Biotin study that was just reasently published. Maybe that would be something worth to try. My son had HSCT last September in Chicago. So, I'm very interested to see how your journey continues. Good luck, Dave, don't give up.

Stefka 09-14-2015 08:47 AM

Hi Dave, may I ask what DMDs have you been since HSCT and have you considered Lemtrada?
Thank you

ActiveMSers 09-22-2015 04:02 PM

Stefka, up until Sunday, I'd been on zero DMDs, or any other drugs for that matter, for the past 5 and a half years (other than Viagra and Ambien, used as needed). I'll make a separate post (or blog) about the whole med decision thing shortly. Lemtrada was definitely on the table.

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