3 years since HSCT for MS

Welcome to another HSCT experience update and I hope everyone had a great MS Awareness Week 2022, last week.

I wrote on my social media that having been diagnosed at 15 (first symptoms at 13), I feel like I have had many, many weeks that I have been aware of my MS (1562 since my first symptom – can you work out how old I am?!).

I had the opportunity to reflect upon my HSCT experience during MS Awareness Week, so I thought that now would be the perfect time to touch on HSCT again.  One thing I should say, for those learning about it, is that I wasn’t the ‘typical’ HSCT patient. Having been diagnosed with Relapsing-Remitting MS initially, I had HSCT when I had had MS for 25 years and had transitioned to Secondary Progressive MS.

I have had almost all the symptoms that can be associated with MS over the years, with the exception of MS hug (apparently not as soft and cosy as it sounds).  According to the MS International Federation:

The most common MS symptoms are fatigue, pain, bladder and bowel issues, sexual dysfunction , movement and coordination problems, visual problems and cognition and emotional changes. However, any neurological symptom or sign may be part of a person’s MS.

I can attest to all of those over my years with MS. I entered into HSCT having experienced a gradual worsening of symptoms for the previous seven years and active lesions on my MRI.  I hadn’t had an identifiable relapse, however, in 10 years.  A lack of relapses, then, does not always indicate that your MS is ‘stable’.

I wanted to update everyone about my experience, three and a bit years down the line.  I can’t believe that it was three years ago, to be honest.  I often almost forget about it, until someone mentions it to me, such as Dom Shadbolt of theMSguide.com.  Dom is currently following Rachel on his YouTube channel. She is about to start her own HSCT journey and he was also keen to chat with me as an old-timer someone who has been through it and come out the other side.

I couldn’t think of a better video to share about where I am now, 3 years post-HSCT.  For new readers, HSCT was offered to me because 1) my neurologist is involved in researching HSCT and 2) he hoped it would halt the active lesions that were still forming in my brain.

Please do read my 2-year update as well as I would say that my symptoms are the same now, particularly the spasticity. That is something that I am still trying to deal with and will be a topic for another blog post in the future, I’m sure.

Here are my thoughts about HSCT, 3 years on:

I was re-reading my very first post about HSCT, when it was something that I had just made the decision to try.  You know what?  My initial thoughts about it still stand:

“And, ultimately, this is what has made me decide.  Because MS is a slow, insidious disease that has taken so much away from me… my mobility, my energy, my ability to be an active parent, an equal partner, my working life, my ability to dance, to run, my independence, spontaneity… and I would do anything, anything to try and stop it in its tracks.  This is my anything.”

I can wholeheartedly say that I don’t regret having HSCT, even though I haven’t seen the same physical symptom-relief that others may have.

Sending love this MS Awareness Week

Previous posts about my HSCT experience: