The graphic above is a relatively good description of recovery from HSCT.  It is misleading though as the arrow points completely up….but in reality a full recovery with reversal of symptoms is not typical and is not the goal of HSCT.  The goal of HSCT is permanent remission.  The disease becomes dormant and our bodies stop attacking our brains and spinal cords but the scars remain and may continue to interfere with our “wiring.”

I read the HSCT facebook pages of HSCT hopefuls and upcoming trial participants who ask “what symptoms are better?”  The truth is that for some people, particularly those who are young and were diagnosed with MS within the past couple of years, may have that dreamy full recovery.  But for those of us who have had MS for a long time, have had more years of this dreadful disease, we are grateful to be in remission and maybe see minor improvements as well.

Within the first year of HSCT it seems to me that many of us experience a period of euphoria…grateful for a new immune system, seeing some quick improvements and excited about the possibilities and we want to shout HSCT from the roof tops.  And we should of course! But then real life starts to settle back in and the dreaded “roller coaster ride” starts and stops and takes twists and turns….and as some speculate, me included, the ride may never end.  The lesions that I have from the beginning may always remain and may always flare up.  My hope is that the trials for repairing mylein will show some promise and those damaged lesions can be healed to allow for a complete reversal of MS.

Now…..on to my 2 year visit!

I was happy to run into a friend who was a couple doors down while we had HSCT together- she was in town for her 2 year visit too!

Yesterday I had labs done and MRI of brain and C Spine.  No new lesions!  Honestly I’m very confident that I will remain in remission, forever, at this point.  However I’m always happy to hear those words.

Today I did some testing, met with the study nurse, the neurologist, Dr. Balabanov, and the infamous Dr. Burt.

For those just tuning in I’ll explain, to the best of my understanding, how our progress is monitored in addition to MRI data.

I’ve also included my own progress.  I was able to sneak a peek at the paper with my history on it.  Since I saw Dr. Burt immediately after Dr. Balabanov my new scores for the tests performed by Dr. Balabanov were not yet reported to Dr. Burt’s team.

1. EDSS (Expanded Disability Status Scale)

My scores:

Pre-HSCT-                 4.5

6 mo post HSCT-      3.0

1 year post HSCT      2.5

2 year post HSCT     This wasn’t tabulated yet but I’m guessing 2-2.5.

2) NRS (Neurologic Rating Scale).

I don’t know what this scale entails exactly.  Score increasing is positive! That’s all I know but here’s my history:

Pre-HSCT-                 77

6 mo post HSCT-      88

1 year post HSCT      96

2 year post HSCT     This wasn’t tabulated yet

 

3) 9 hole peg test to measure upper extremity coordination.  Literally you are timed on how quickly we can put all of the pegs in and take them out again using dominant hand then the non-dominant hand.

My History:

Pre-HSCT-                 22.62

6 mo post HSCT-      25.1

1 year post HSCT      19.

2 year post HSCT     This wasn’t tabulated yet

4) PASAT (Paced Auditory Serial Addition Test).  Also known as mind-boggling torture.

My History:                               3 second pace                2 second pace

Pre-HSCT-                  95%                                 70%

6 mo post HSCT-      93.3%                              78.3%

1 year post HSCT     93.3%                              83.31%

2 year post HSCT      100%!!                             90!!%

 

5) Timed 25-foot Walk

My History:

Pre-HSCT-                  5.6

6 mo post HSCT-      4.4

1 year post HSCT     4.6

2 year post HSCT      not yet tabulated but I bet it’s improved. (lower is better)

Visits with the Docs

Dr. Balabanov, the study neurologist, is very personable and takes a good amount of time with us.  Since my memory continues to be an issue I brought a list of the history of health issues I’ve had over the past year, those that I’ve had since having HSCT, those issues that resolved after HSCT, and a list of questions.

I’m guessing what people who are considering HSCT must want to know is what issues have been resolved?  The answer is- incontinence and gait improvement (no more walker and rarely use a cane). Those were also more recent declines after my last relapse prior to HSCT.  The early symptoms that I had of vertigo, fatigue, and gait ataxia will likely always remain with me though I may have a reprieve between symptoms reminding me that the lesions remain.

Since HSCT my memory has declined, my fatigue has increased, and “cog fog” is worse.  I also went into menopause due to HSCT so it’s likely that has had an impact.  I returned to work 10 months after HSCT and worked for only 6 months before I got shingles and was just too overwhelmed to continue.  I have not worked for 6 months now and don’t anticipate returning to work for at least the next 6 months. This is not the case for everyone- I was diagnosed in 2003 and had MS for 13 years at the time of transplant at the age of 41.  Those who are younger and/or have had MS a shorter duration are more likely to have better results.  But it’s impossible to predict. I also have had eustachian tube dysfunction with ear fullness and hear crackling sounds in my ears.  It is improving though significantly.

Issues in the past year are numerous and are summed up in my last post.  The only update to that is that shingles tried to return a second time in February of this year.  Dr. Balabanov suggested I have my PCP prescribe Valtrex as it’s mild and can be taken indefinitely to prevent shingles (or herpes…..he made me laugh saying the kids these days are all taking valtrex to prevent herpes….).  He was a wealth of information, too much to list here.

Dr. Burt visit

He’s quick.  Just the facts, nothing but the facts, you can see him tabulating your data in his head. After he leaves you can ask the study nurse more questions as she remains in the room after her darts out.  It’s not that he intends to be cold, he can be quite warm and funny and sweet, but he’s extremely busy saving people so I’m fine with it. He is sweet to pose for pics though (with the flash off!).  I don’t usually ask because I know he’s busy but I hadn’t had one with him for 2 years so I thought why not?

I congratulated him on receiving an award for his amazing work!

Check out the videos from last month in Lisbon.  Very informative.

Dr. Burt receives prestigious Van Bekkum Award!

Links to Dr. Burt’s presentation in Lisbon, Portugal 2018

 

Next steps for me:

Next week I’ll be seeing a neurologist who specializes in vertigo after completing a day and a half of comprehensive tests.  My fear is that he will say “it’s just your old MS lesions” but my ENT suggested it so maybe there are treatments that will help.  Dr. Balabanov seemed to think that would help.

I’ll see an endocrinologist recommended by Dr. Balabanov to help with my menopause hormone issues.  (I’m lucky to live in Chicago only a few miles from Northwestern.).

Dr. Burt performs HSCT for these conditions (from HOPE handbook):

Diseases Treated

Multiple Sclerosis
CIDP
Systemic Sclerosis
Devic’s
Stiff Person Syndrome
Crohn’s Disease
Rheumatoid Arthritis
Systemic Lupus Erythematosus
Vasculitis
Polymyositis
Crohn’s Disease
Rheumatoid Arthritis
Vasculitis
Systemic Lupus Erythematosus
Pansclerotic Morphea

Please share and spread the word about this amazing procedure!

Thank you to my friends, family, and HSCT family for the support.

Ellie