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:
Numbness in right hand
Numbness in left hand
Numbness in face
Numbness in chest
Eye lid twitches
Hand eye coordination disturbance
Bladder retention and incontinence
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…
Until next time! Xoxox
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.