My 6th month HSCT anniversary recently passed. Again, I am very happy that I was able to receive the treatment, and the only regret I have is not doing the treatment sooner. I have read many HSCT for MS articles, and they all say that the goal of the treatment is to stop progression, and any healing is a bonus. If healing occurs it won't be for at least a year, and since the legs are the longest limbs (and therefore have the longest neural pathways), they will likely take the longest (longer than a year) to see improvements, if they see any at all. My biggest MS induced problem is leg muscle spasticity and weakness. My legs are currently unchanged from their pre-HSCT condition (but they do have their good days), and I am working to get my legs stronger and more flexible, with the goal of improving my walking ability. The treadmill we have is helpful - I set it to a very slow speed and attempt to walk slowly, deliberately, and properly. I will do that daily for the next few months and see where it takes me.
Other symptoms I have, either have not changed, or are improved one day and not-so-much the next. Fatigue is reduced, but there are days that I am very tired. Bladder urgency is greatly reduced, but I have had a couple days where my bladder urgency was like it was pre-HSCT. My right index finger seems to be very slowly improving, but it's very slow. And if I am tired, it is 'dead', just like old times. My strength of voice seems to have improved too - some days are like old times, but most days my voice is stronger.
My moodiness, not an MS symptom but definitely a byproduct of having symptoms that make me feel shitty, is alive and well - just ask Anne. But I believe that my mood is my choice, regardless of how I feel, so I will make better choices going forward.
That is it for now. I will provide another update in November, when my one year HSCT anniversary has passed.
For anybody considering HSCT for MS, I have no regrets and would do it again. After all my research, it is obvious to me after reading the medical research stats that HSCT is the only MS treatment with a better chance of stopping disease progression than not. Nothing else comes close.
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King James was The King last night. It is a pleasure to witness greatness.
Yup, I can't help but constantly monitor what has improved (not much) and what hasn't--so hard to remember that improvement is not the goal.
ReplyDeleteWill you be having your follow up MRI soon? I'm a couple months from mine but am already dreading it, the anxiety. Part of me just wants to not do it.
Anyway, glad you're still updating your blog. :)
Your HSCT sister,
S
Hi Susannah
DeleteYes, the biggest thing I have learned post-HSCT, and am still trying to be good at, is patience. Still not great at it, but its the only way. Otherwise, I'll get pissed off and nobody wins.
When I see my Neurologist in September, I will ask for an MRI. Not because I want or need one (how I feel is my only MS concern), but because our buddy Dr.Nadir recommended I get one. And that guy is usually right; so I'll do what he says.
Don't sweat your MRI, it'll be what it'll be. Good luck regardless. And hope you are feeling great.
I'm glad to hear that you are improving. Keep a positive attitude, try to stay busy and stay determined!
ReplyDeleteI'm glad to hear that you are improving. Keep a positive attitude, try to stay busy and stay determined!
ReplyDelete