The HSCT Chronicles – Month Four

I can’t believe it’s been four months since my HSCT for MS treatment! I had my stem cell transplant on the 15th January and have basically been spending my time since just pottering, recovering and resting.  I’m on a closed Facebook group for people who have been through HSCT and some patients (particularly those from countries other than the UK) seem to return to work within a couple of months of the treatment.  All I can say is that I am glad the guidelines in all the literature here in the UK tend to recommend waiting at least 6 months before attempting work.  I don’t think that my brain would be able to handle it quite yet!

So, the low down on how this month has been:

Hair

I know, I know.  Not important in the whole scheme of things, but important to me.  It continues to grow back, quite thickly now and seems to be starting to have some of the ‘chemo curl’ that I was told about.  Unfortunately, my greys haven’t subsided as they do for some others!  I am keen for it to grow and, until it does, I find accessorising it a bit with headbands makes me feel more feminine and hides the weird texture it has.

Nails

On a similar vein to hair, i.e. not that important, but something that has definitely been affected by the chemotherapy and medication that I have been on.  You can actually see a clear line in my nails where the new, healthy nail is growing and the part above is flakey, bumpy and split.  I have had to cut them really short to make sure that I don’t catch them on anything and have probably overdone the hand cream in the past month, but that’s what seems to keep them in check!

Hormones

One effect of the chemo is the possibility of a loss of fertility. As a 40-year-old mother of two, I wasn’t too worried about this but I am aware that with lower hormones can come brittle bones.  Frequent hot flushes made me go to the GP and a blood test has confirmed that I could use a bit of help with my hormones. As such, I will be starting some medication in the next few days to help with this.

General Health

Well, I’ve got through my first cold since I’ve had my new immune system! I seemed to suffer the same as everyone else in my family and basically just spent a few days sneezing, coughing and generally feeling sorry for myself. I was worried that it would be worse than it was as, in theory, my body as no memory of past illnesses, but it seemed to cope ok.

MS Symptoms

Spasticity

Something that I mentioned in my month three update was the fact that I am suffering from painful spasticity in my legs and hips.  This is still happening and can make it very difficult to get moving after sleeping or sitting for an extended period of time.  I have been carrying out some exercises as advised by my mum (a retired physiotherapist) but am still waiting on a referral to a specialist neuro physio.  The exercises definitely seem to help in the short term and I am continuing with my yoga/stretching to the best of my ability.  It’s hard though because the spasticity is really affecting my sleep. Not that I ever felt refreshed after a sleep – my MS never lets me – but it is even worse now.  I just can’t get comfy in bed and so am tossing and turning at night.  I have read that extra magnesium in meant to help, so have been using magnesium body butter on my hips and thighs before bed and also have been taking a magnesium supplement.  This does seem to help as I notice the difference when I don’t.  I have also been adjusting my Baclofen (a muscle-relaxing medication) dose to have more at night, under the doctor’s orders, and that seems to help.  Hoping that this is a temporary side effect as it is something that has definitely worsened since my HSCT.

Walking

When I last saw my neurologist (approximately one month ago), he was pleased with how I was doing in regards to my walking.  Although the spasticity definitely adversely affects my gait, I was able to slightly increase my speed in my timed 10-metre walk without crutches.  Day-to-day, I am still very reliant on my crutches and would not feel safe without them or be able to go much beyond 10 metres, but I am pleased that there seems to be some improvement. I have just started at the gym and can walk on the treadmill – holding on and veeeeeerry slowly – for a very short time, so I plan to try and increase that over the coming months.

Fatigue

Although I am tired because of my problems sleeping, my actual MS fatigue seems to be somewhat improved since my HSCT. It can be difficult separating the two, but I always consider my fatigue to be like bone-crushing tiredness, where even the effort of lifting my arm or trying to have a conversation is just too much for my body to handle. Perhaps the lack of MS fatigue is because I am actually doing very little day to day in terms of exerting myself, rather than a byproduct of HSCT, but I am happy for it to stay away!

Cognitive Issues

Word-finding issues, intolerance to noise and too much stimulation? Yep, still there.  This doesn’t seem to have made any improvement since HSCT – but it hasn’t got worse, either.

Mood

I continue to take my daily citalopram tablet to help with my mood.  I actually didn’t think that it was doing very much but then I forgot to take it for a couple of days and, oh my goodness, was I just a bitch! Ha Ha! I think that it helps me to be on more of an even keel. I try and boost that through exercise and meditation – I have bitten the bullet and paid for a Calm subscription which means that I have access to the whole app. And who doesn’t want Matthew McConaughey reading a relaxing, meditative sleep story to them at night, eh?!

***

Ultimately, I feel ok.  I am in some pain, but I am still glad that I did HSCT.  I keep reminding myself that, in my case, we weren’t necessarily looking for improvement in symptoms but instead to stop the ongoing inflammation in my brain.  Time will tell about that (and my next MRI in July) but, for the time being, apart from the spasticity, everything seems to be ticking along and I am happy with that.

Do feel free to comment here or send me an email (trippingthroughtreacle@gmail.com) if you want to chat about anything if you are thinking of going down the HSCT for MS route.  I’m not an expert but I will answer all the questions I can!

Till next time

 

 

 

If you would like to read more about my HSCT treatment, previous blog posts are: