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

FIRST…if your’e seeing this on Facebook please read and not just like my new pic!  🙂  yes, my hair is growing!  Still no haircut- yet.  I am curious how long it is straight but I think it would look weird.

It’s been a year and a half since transplant.  I’m so tired of hearing about “the roller coaster” and reminding people in the clinical trial about it myself….I’m ready for this ride to come to a halt.

I was prepared for some challenges and ups and downs….but I thought they’d all be MS related.  It never occurred to me that I’d encounter other health issues.  And the MS is still really good!  I have started taking antivert (for vertigo) and baclofen (for spasticity) again but I’m okay with that.  Those were early symptoms, particularly the vertigo, so I will likely always have that to deal with.  HSCT doesn’t promise to reverse symptoms, only to halt progression.  But I’ve been VERY lucky and most of my symptoms are significantly improved or completely reversed.  I do worry about my level of fatigue and cognitive issues- I forget a LOT.  “Cog fog” is a real thing and I’m afraid that being off of a DMD for awhile in preparation for transplant may have been problematic.  I was without a neurologist for a short time since I had to fire the old one who didn’t agree with transplant and was waiting to get in to see the new one.  He did put me on steroid infusions but I’m afraid it may not have been soon enough.  I liked to blame it on “chemo brain” but I’m not sure that I can still say that all this time later.  I’m hopeful it will improve.  Somehow.

I’ve been to a number of doctors lately.  I’ve been hanging out at Rush way too much. I am glad to have quality healthcare nearby….makes ubering much more affordable and is even cheaper than parking too. Within the past month I’ve seen 4 different doctors and I have appointments to meet 3 more.

In October, I went to my PCP because I had some strange rust like bleeding and I’m in menopause.  My doc did a pap smear (which turned out normal) and she could see it internally.  She sent me for pelvic and abdominal ultrasounds and said she’d give me a referral to a gynecologist to follow up depending on what my results showed.  My results showed that my uterine lining is too thick.  So I was referred to an oncologist who specializes in gynecology.  When I got off the elevator I saw the word “Cancer” everywhere and I’m thinking, “how could I have cancer when I had chemo?”  Well hopefully I don’t.

The oncologist was going to take a sample from my uterus but she didn’t dilate me and said my uterus was “closed.”  Well, duh.  She tried to take a sample from outside but it came back as just tissue nothing could be read from it.  The oncologist said to stop taking the bio-identical hormone because maybe my body is trying to have a period and see if that’s all it is.  So I’m waiting.  Unfortunately I’m having hot flashes at night so I don’t think that’s it.  I have another pelvic ultrasound scheduled for the end of this month to see if the lining is still thick or has gone down and then another followup appointment after that with a regular gynecologist to talk about next steps.

Then a few weeks ago I saw my PCP again because my knee has been hurting to the point that at times I can’t bear weight on it or I’m limping.  I’m not sure what happened.  It’s been puffy a couple of months- I remember showing it to the nurse at work and not remembering what happened to it.  Being clumsy and forgetful isn’t a great combo.  I assumed I banged it on the desk or something.  So it got to a point where icing it and heating it really wasn’t doing anything so I saw my PCP and she gave me a gel to put on in for pain.  I had an x-ray done and it just says “joint effusion” which just means fluid.  So next step is with sports medicine doc a week from Monday. I’m using a cane again.  And a knee brace. Blah.

At the same time, my positional vertigo seemed to be back as I rolled over on my left side in bed and the room was spinning.  So I went back to my ENT but by the time I finally got in the BPPV had subsided it was just general vertigo.  But I still wanted to talk about the cracking and fullness in my ears that’s been going on since last year after transplant.  I had gone swimming, when it was allowed, but since July of last year I’ve had crackling in my ears and antihistamines have been very slow at working. It’s gradually improving but it’s still maddening at times.  A friend in my group has the same thing and I was hoping she found a solution but not yet.

The PA at the ENT confirmed BPPV somehow resolved itself but gave me orders to see an audiologist for hearing and balance testing and a referral for allergy testing.  Yesterday I went to the audiologist for a hearing test and a balance test.  I couldn’t take any antivert or antihistamines in preparation for three days.  So that was a challenge.  My hearing was normal which I expected.  I haven’t heard anything about the balance testing yet but don’t expect to for a bit.  I won’t get into the allergist until next month.

Work.  I seem to have confused a lot of people with my Linked In update.  Am I working?  Barely.  I’m consulting for someone for pharmacogenetic testing for senior citizens.  I obviously have a strong interest in precision medicine since transplant and I think it’s fascinating that your DNA can tell you and your doctor which medications work for you and your genes.   Like, I always knew Tylenol didn’t work for me but Aleve does and now I can prove it.  Since I’m consulting I can work as little or as much as I can tolerate.  It’s also good to have a placeholder in my resume.  I’m also taking one course at a time toward my MHA….5 more classes and a capstone and I’ll be done.  I wish I could do more….but right now I just can’t.

I have faith that in another year….hopefully less…..I’ll be great.  But for now I’m just going to do what I can and continue to focus on my health.

Sadly, one of the patients in the trial recently passed.  HSCT is a very serious process and Dr. Burt warned me, as all his patients, at every appointment before the transplant “you could die from this.”  And a few have and it’s very sad.  But other medical complications do happen and a weakened immune system makes us vulnerable during transplant.

This blog entry is dedicated to Carol.  May her memory be a blessing.

Thank you to my friends and family for their continued support.  It means everything.

Love,

Ellie

 

I’m happy to report I’m back to work!  I’ve been an administrator/executive director of assisted living facilities for the elderly for the majority of my career.  I didn’t think I would be able to do this type of work again.  But I am very fortunate to be working for an owner who allowed me to start part-time for the month of April.  I’ll start full time in May and I have permission to work from home one day a week if I need to still transition into full time.

My current health status is improving.  The vertigo has cleared up and I’m back to baseline.  I’m always a little dizzy and take antivert twice a day.  And I’m really tired.  I haven’t been to the gym and I’ve gained more weight.  The integrative medicine doc tested my adrenal glands and I got the results back last night.  I have adrenal fatigue and he said to order adren-plus and to take 2 a day.  Hopefully that helps.

I returned to Northwestern yesterday and today for my one year visit!  I’m early actually since transplant was 6/6/16 but my COBRA insurance ends this month and I’m not sure what my new insurance will cover.  The MRIs of my brain and C-spine both show REMISSION! I already suspected this but it’s always a relief to hear!

My blood work also came back totally in-range!  I did the walk, the peg test, the cognitive math test, and I felt better doing all of them than I had during either of the previous testings.  I also hopped on one foot again which I couldn’t do before HSCT for some reason.  The study neurologist suggested I try green tea capsules to improve my energy level so I may try that.  Both he and Dr. Burt were happy with my progress- I am too!

Our HSCT summer 2016 group has become known as the “summer minions.”  Our facebook group leader had a great idea to make bracelets!  We are like a little family and I’m so grateful to have these men and women on my team!

 

Sadly, we recently lost a member of our group.  He did not pass from HSCT but rather from a separate medical procedure.  We are all devastated and wish his family strength.

This blog entry is dedicated to David.

 

I finally decided to get my hair colored!  Feels good to recognize myself again!

Since last month’s update a few things have changed….I became more tired and spent 12 hours a day in bed.  I also had more periods of vertigo and not being able to drive….so I haven’t been as active as I should be.  I also spent half of the month away from home while I stayed with my best girlfriend so now that I’m home I’ll make an effort to get back to the gym now.  I have still been having awful joint pain, and my finger and toenails breaking and splitting.  My hands and feet cold at times which actually is handy at night when the rest of me is hot….but my hot flashes have stopped!  I’m hoping they don’t return for awhile.  The other women in my summer HSCT group have also reported that theirs have stopped too.

I still have clicking in my ears from the eustachian tube issue and it’s annoying but it’s very very slowly improving.  I’m just going to hope it continues to slowly improve.  I believe it’s due to the cold I had that lasted several months.  It’s strange dealing with “normal people” colds….when I had (active) MS I rarely caught anything since my body was so busy attacking itself.  I had never had a sinus infection in my life so that was all new to me.  My memory is still a problem which is kind of frustrating but at least I entertain myself finding stuff in weird places, etc.  Gotta laugh.

I went to Northwestern last month for my 6 month checkup.  This involved an MRI of my cervical spine and my brain (on the same exact machine each time!), blood draw, and visits with the consulting neurologist Dr. Balabanov and with Dr. Burt the study physician.

I had never met Dr. Balabanov before as I wasn’t required to see him prior to transplant so I wasn’t expecting to see him this time….but I was told he had an opening that they wanted to fill.  He estimated my EDSS score is now 2.5 which is down 2 points from before transplant!  He said this is typical.  Amazing…the goal of HSCT is to STOP the progression of the disease….improvement of disability is a bonus.  I was able to walk in a straight line for the first time in years, and I can hop on one foot!  I don’t know why, but some of us MS folks are unable to do this…probably related to balance, etc.  But I can suddenly do it now.

Next I went to see Dr. Burt last month for my 6 month check up.  He showed me my MRI results which indicate NO NEW LESIONS!!!!  This indicates remission.  I’m very grateful.

My blood work showed thyroid issues so I followed up with an integrative medicine doc who I saw yesterday and was diagnosed as hypothyroid.  I’m not surprised, I’m actually relieved to finally have this diagnosis as my thyroid has been weird for years but was never “bad enough” to be treated.  It was always a “we’ll watch it….” and now finally more than watching.  Treating.  He prescribed Nature-throid and also set me up with a compounding pharmacy for a bioidentical hormone to address the menopause.  I’ll go back to get more labs in a month and we’ll work to get my levels to where they need to be.

This is a difficult “roller coaster” of recovery but I am slowly improving.  I am having difficulty focusing so I decided to this semester off of school as well.  I’m hoping to work again in a few months and will resume my studies when I’m able.  For now, I’m focused on my health and recovery.

Thank you to friends and family for your support!