10 Months After HSCT

#StopMS

#StopMS

As I write this I am sitting outside (in 87 degree weather) watching my kids run around at a local park. I can’t help but feel like this is a dream. A year ago today I started pre testing for HSCT with Dr Burt in Chicago. It hasn’t even been one year since my actual transplant and the ways my life have changed have been nothing short of a miracle.

Recovery after HSCT is a rocky road but well worth it. It is very scary to feel old symptoms when an infection or illness presents. It is a vivid reminder of what life could have been like. It is close to heart breaking to think that every MS patient isn’t given this as an option to consider.

It would be easier to list what has changed then type out a long paragraph for you all to read.

What still remains:
Hip flexor weakness in right leg
Hamstring weakness in right leg
Quad weakness in right leg
Trouble with a walking pattern
Trouble with balance (Low fall risk now)
Weakness in right hand grip

What has disappeared:
Foot drop
Numbness in right hand
Numbness in left hand
Numbness in face
Numbness in chest
MS hug
Fatigue
Optical neuritis
Eye lid twitches
Heat intolerance
Hand eye coordination disturbance
Bladder retention and incontinence
Slurred speech
Delayed thoughts
Forgetfulness

In a nut shell almost all of my cognitive and sensory issues have completely gone away. My motor function issues still remain but gradually improve day by day (except my foot drop, that is about 95% improved). Dr Burt says two years is the magic number for a baseline of recovery. I am anxious to hit that milestone.

Recovery is not easy. It is a lot of ups and downs emotionally and physically. It seems like as symptoms start to improve they actually worsen first. Two steps back three steps forward. Sometimes to the point that the pain or loss of function is so much worse then before HSCT. This lasts about 2-4 weeks and then the symptoms starts to fade very quickly (within a week or two). The most painful reversal of symptoms so far has been the muscles controlling my foot that I no longer have foot drop in and my right hand which had motor and sensory symptoms. At times the pain seemed unbearable… But it was worth it.

I can now take my children to school, watch them play at the park, I can stand long enough to wash my own dishes and do my homes laundry. I can go to school events for my children, I can go grocery shopping. I can do things by myself! I no longer need someone with me 24-7. I am able to be a mom again… I can not run around or walk like an average person but I can do it in my own way.

Emotionally it is so hard for me to accept why didn’t any one tell me about this sooner? How could anyone of the many doctors I flew all over the states to be seen by not mention this? If I just would have had HSCT a few months sooner I would be an average regular person right now free of all of my past symptoms… That last flare left me with this severe damage that effects my leg. It’s hard to accept… However seeing the number of people that have found HSCT since I started sharing my story last year has helped make my recovery much easier. Knowing I have helped someone else rid their life of this horrible disease feels pretty awesome.

If I had to do it all over I would have had HSCT done after I failed rebif and after failing Copaxone. When it became more difficult to “fake” being normal.

I hope that message reaches at least one more person and saved their future also….

Don’t wait until it’s too late…

‪#‎stopMS‬

Until next time! Xoxox

Heather

This post originally appeared on Heathers HSCT Journey. We are sharing it here with Heather’s permission. Please take the time to visit and follow her page if you are interested in learning more about her experience of HSCT.

7mo After HSCT

Home 7 months post

Three week ago I was preparing a much different post for all of you. It was a post about my MS returning…

HSCT Journey

Last I posted in December I was sick with a horrible bout of sinusitis. I had been warned it is not uncommon for old symptoms to return during illness post HSCT but this felt different.

My leg which was effected by damage caused by MS prior to treatment was stiff and became even more stiff over a span of two weeks, my right arm became weak, my vision in my right eye became doubled. After a second round of antibiotics my sinusitis was gone but these symptoms continued to worsen. Panic slowly set in that my MS had returned. It just didn’t add up, it felt similar to how I felt prior to HSCT but not exactly the same, I noticed they were worse in the morning but improved throughout the day (total opposite of MS), I had no fatigue, I had no tingling or numbness.

After a week of this with no sign of infection the realization that MS may be creeping its way back became a reality as my vision blurred more and my weakness became more dominate in my arm. I spoke with Dr Burt’s office who arranged for me to come out to be evaluated as soon as possible to figure out what was wrong, However the day after I spoke to them everything changed….

I went to visit my Ear Nose Throat specialist in hopes she could confirm or rule out a sinus infection for certain. After a CT scan of my sinuses, infection was ruled out. After her I visited the eye specialist that has treated me for optical neuritis for the past 4 years for his opinion on my vision. After an extensive exam and new visual field testing he assured me this was not optical neuritis and my vision had improved greatly since HSCT. He assured me this was not MS related but unsure of what could be causing the double vision. Frustrated, panicked and overwhelmed I felt the best hands for me to be in were in Chicago with Dr Burt and his team until that night I spoke with a friend who is a pharmacist about what was going on. I mentioned that I had been on synthroid in our conversation at which point she told me to contact my doctors immediately about rare serious side effects caused by synthroid….

After some blood work and stopping the medication synthroid was determined as the culprit for my current issues at the time.

I had been on synthroid for hypothyroidism since September, I had a few issues with the dosing, it had to be lowered frequently but once I reached a low dose it worked well for me (or so I thought). My reaction to the synthroid was masked by the sinusitis for almost 3 weeks, what I thought was sinusitis bringing back old things was actually a reaction to synthroid that was building up slowly but horribly.

After stopping synthroid 14 days ago I have completely stabilized with all of my similar to MS symptoms slowly disappearing. My vision improved almost immediately after stopping the medication and is now about 95% back to normal.

Scared is not the word to describe how I have felt the last few weeks…

Today I am happy to report I am seeing the true gains of my strength and endurance post HSCT (and post synthroid). Today I went grocery shopping, took my toddler to a music class, did homework with my kindergartener after picking her up from school, made dinner then did something that was just a dream a year ago.. Took my two amazing children to the playground to play….

My MS is still gone.

While going through this situation and now feeling better it really made me see how much my quality of life has improved. As I have said before my biggest and only regret is not having HSCT done sooner.

I have a long way to go strengthening my leg that MS destroyed. Although big issues, my leg and a bit of balance issues are the only daily reminders that I ever even had MS. I am confident that this was a speed bump in my journey of the beginning of my new life… Life after MS

Post originally appeared on Heathers HSCT Journey page on Facebook, republished here with permission.