Jenny Hi everybody, really hoping everyone has been well? The weather here in the UK has been slightly warmer recently, so I’ve been enjoying the sunshine 🙂
It has now been three months since I had my HSCT for MS (a stem cell transplant to try and ‘reset’ my immune system), so I thought that I would update you all. Some may know that I have been documenting my stem cell transplant journey on my YouTube channel, so rather than write everything out here, I thought that I would attach the video I recorded earlier today to let you know how everything has been going.
Basically, I am feeling happier but still suffering from significant leg and hip pain due to increased spasticity in my legs. The Neuro seems happy with where I am though, so I am pleased about that! The next three months, before my next MRI, will be concentrating on reducing this pain, hopefully seeing a physio and upping my stretching even more!
Although I will continue to write other MS blog posts in the meantime, I will be back in a month for a further HSCT update 🙂
If you would like to read more about my HSCT treatment, previous blog posts are:
The HSCT Chronicles: Telling the Kids
The HSCT Chronicles: To Wig or Not to Wig
The HSCT Chronicles: It Starts!
The HSCT Chronicles: Days 1 – 5
The HSCT Chronicles: The Harvest
The HSCT Chronicles: Life in Limbo
The HSCT Chronicles: The Transplant
The HSCT Chronicles: Days 5-12 post Transplant
The HSCT Chronicles: Home Time
Loved the video update! I’m glad at least the neuro is pleased with where things are, and I guess in the grand scheme it’s still early days but obviously that doesn’t help with the pain and leg spasticity you’re having right now.
Jen, I want your teeth. Want to swap?
What do you think about the botox idea? I think that could be worth checking out, I know a few people who’ve had botox for different reasons, some for nerve-related pain and have found it helpful. I can see it being good for muscles and spasticity. Fingers crossed they can get that set up soon so you can see if it can help ease things off a bit, which in turn could help your walking, as you said.
Your eyebrows are looking good, eyelashes and hair too, that’s fab! 🙂
Lots of love to you Jen – I hope you have a good long Easter weekend ahead ♥
Caz xxxx
Hi Caz! I took a break from my blog over the Easter weekend, so it was so nice coming back to this message 🙂 Thank you so much for your comment about my teeth, I think it is because I had so many pulled as a child due to overcrowding that they are ok now, haha. I’m definitely up for the botox treatment. Until then, I am taking my baclofen to help and doing my stretches, but they are so stiff. I hope that Botox may be able to help, I’ve also heard good things. I hope that you had a good Easter? We were very lucky with the weather, couldn’t have asked for better, really! xxxx
It’s crazy how similar our experiences are recovering from two very different treatments. I’ve had an enormous increase in spasticity in my legs as well post-Lemtrada. I met with the doctor in my neurologists office who does the Botox injections. I’m waiting for insurance approval but we’re on to get that going in about a month’s time. I think that might help me? Who know! This recovery from Lemtrada has been much more difficult than I expected. I mean, I knew it would be hard but it’s been a lot harder than I expected. I also don’t regret taking this big step. Sending you all the good vibes for more recovery to come your way! 💕
Hi Beth and thank you so much for your comment! I reckon all these drugs we are pumping into our bodies will be having an impact on the spasticity. Let me know how you get on with the Botox. I’ve heard good things and I hope that everything goes smoothly for you with the insurance agreement and treatment xx
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