Week +39

4th Rituximab infusion done, with no issues or side effects.

Most of my symptoms have gotten worse over the last two months. I don’t know if this is part of  the “rollercoaster recovery period”, the weather over the last few months, or down to my life being busier and more stressful over the same time period. It may even be a combination of all these things, only time will tell. My mood has also been low during this period too ( apologies to family and friends who may have experienced this firsthand).

My next update will be in December, at my 1st HSCT birthday, hopefully by then my symptoms will have improved again, or at the very least I will have better idea what may be causing the problems.

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Week +29

3rd Rituximab infusion done. Other than having a little bit of a lift (physically) for a couple of days due to the steroids given before the infusion, and then the crash for a couple of days after that, I haven’t had any symptom/issue changes since I updated the “About me and my MS issues” page three weeks ago (six months post HSCT). A lot of people who have had this procedure done, believe that any improvements felt due to the steroids (at any stage of the procedure) are an indication of improvements that may appear and remain long-term. I keep reminding myself of this, and that helps me to keep focussed on the long-term outlook.

 

Next update will be around the end of August, after my next infusion.

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Week +21

Second Rituximab infusion done with no issues or ill-effects. A few of the other people from the group I was in for HSCT, had said they felt a little run-down and very tired after their second infusion, and this made the anticipation of my trip to Manchester and back a bit more thought-provoking this time round. The Haematologist in charge of my infusions, has suggested that instead of stopping my prophylactic medication in June, I continue the medication until three months after my final Rituximab infusion (due to the fact the Rituximab is keeping my immune system compromised).

My spasticity or the reduction in my flexibility (still trying to work this one out), is still as bad as it was in my previous post. I am still working on my exercises and stretches, and although I feel I am increasing my stamina levels, I don’t feel as though my fitness is improving (?). Over the next 2 months I hope to start incorporating some exercises to work on my strength, as well as maintaining the exercises I am currently doing, to see if this will help with my fitness levels.

Unlike other people who have undertaken this journey/experience before me, and have experienced “the roller-coaster recovery”, my issues/symptoms have remained constant, and this has made my recovery (for me) un-eventful (so far). From what my family can see, I look to be having more issues than I did prior to the HSCT, but I am attributing this to my spasticity/flexibility issue.

Again, I will make my next post after my next Rituximab infusion towards the end of June.

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Week +12

 

At this point in time it is still too early to tell if the procedure has been successful or not, it will be in the 12-24 month range before I will know whether it has been successful in halting my progression. But I will continue to mention any changes I notice, because even at this early stage, I see any/all changes as a sign that something is happening (good or bad).

Currently, my muscle spasticity is worse, which is affecting my walking/standing and also my hand dexterity. My fatigue is different, can’t really explain it anymore than that, but other MS patients will probably understand this. Lastly, I am noticing a change in my posture (could be down to the spasticity?).

 

I had my first Rituximab infusion this week, ended up going to the Christie Clinic in Manchester. The place I found in Scotland willing to do the infusion, found that they could not obtain the Rituximab, and that it had to be done through a hospital setting (hence going to Manchester). Other than the infusion taking a lot longer than I expected, I suffered no ill-effects (not that I was expecting any).

 

I am still working on my exercises/fitness, and am managing to increase the amount I can do. Although there has been an improvement from when I started, I still do not feel I am at the level I was at prior to having the HSCT procedure. Hopefully by the next update, I will be at that level or beyond.

 

Below, I have included a couple of pictures, just to show my hair growth. I never lost all my hair completely, never got any less than the previous pictures, and I am now back to my normal growth.

 

 

 

I will post my next update around the end of April, after my next Rituximab infusion.

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Week +6

Well, as expected, the NHS are no help at all as far as the Rituximab infusions go. I am still waiting on some places replying to my initial enquiries, but I may have found a place in Scotland willing to do them (just need to confirm the finer details and final price).

 

Another small change noticed this week, I have started sweating (something my body hasn’t done for a number of years). Not necessarily a good thing, but all these small changes must mean something is going on.

 

I didn’t think I had lost any more hair from my head, but when I compare this picture to the one from two weeks ago, there does appear to be a difference.

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I will do my next post around five weeks time. Hopefully by then I will have found a place to do my Rituximab infusion, and also have had the first one done.

 

 

For people in the UK (or people who know how to access BBC iplayer from outside the UK), there is a Panorama program about HSCT for MS on Monday night. I don’t know how in depth it is, or even if it is a positive or negative spin on the procedure, but it may be of interest to some people.

http://bbc.in/1PhFNl3

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Week +5

Little blip this week.

 

Wednesday and Thursday were a couple of hard days this week. Felt very weak and fatigued, and had some difficulty just moving around the house. I don’t know if maybe I overdid the exercise thing (not that I did too much, I think), or taking on too much at the same time with trying to find somewhere for my follow-up infusions, or if it’s just one of those things. But this week should be a little easier as I have contacted all the places I could think of with regard to the infusions (just waiting on replies now), and I’ll scale back the amount of exercise I tried to do last week.

 

Got an appointment with my GP this week to let him know I’ve had the procedure done, give him a copy of my notes from the procedure, and to discuss the possibility of the NHS helping out in any way with my aftercare (won’t be holding my breath on that one). I also need to question the radiologists report from my last MRI, questioning my MS diagnosis and suggesting possibility of Neuro-Myelitis Optica (Devic’s disease).

 

Still haven’t needed to shave, and still have the same amount of hair left on my head.

 

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Week +4

It’s still early days, and I’m still not reading too much into any of these changes, just trying to paint as full a picture as possible.

 

Whether this is down to a change in the temperature here (it has gotten noticeably colder over the last week), or down to the procedure, only time will tell. My feet, which I haven’t really had any sensation in for the last couple of years, have been cold over the last 3-4 days. I see this as a positive, because, I am at least getting some sensation back in my feet. One day last week I was able to traverse 2 stairs at a time on the staircase, something I have not been able to do for longer than I care to remember (haven’t done it again since).

 

I started doing some VERY light stretches last week, in preparation for starting some form of exercising next week. No surprises here, went from being able to stand on my fingers (legs straight!) 7 weeks ago, to not even being able to touch my toes now (more work required here). I will continue to work on this, as well as starting some light cardio work on an exercise bike.

 

It is supposed to be expected that you will lose all the hair on your head ( and possibly from other body area’s), about 10-14 days after day 0. I returned home (week +2) with as much hair on my head as I would normally have, but probably lost about 75% during my first week home. There has been no more signs of any more falling out, but I’m still hopeful of becoming bald (sad, I know). I haven’t needed to shave for over 2 weeks, and will probably have about another week before my 5 o’clock shadow dictates a need to shave.

A word of warning, some may find these pictures scary (LOL).

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Please also notice the t-shirt, kindly supplied to us all on this particular journey (thank you again kind sir), by one of the other patient’s.

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Week +3 (weekly updates for the next month or so)

First post since arriving back home!

 

The journey back home although long, was fine and uneventful. I can’t praise the airline and the respective airports enough, regarding the wheelchair assistance they provided to me during all parts of the journey.

 

Before departing for Mexico, I had made the decision that I would rely completely on the wheelchair while there, and would not even attempt to walk (furniture/wall surfing that I do back home). I felt this would be best for me, so as to give all my energy to the procedure and recovery process, and also to avoid any potential issues that may have been caused should I have fallen while trying to get about. I also thought it was best (for me), to refrain from exercising whilst there (this wasn’t as hard as I thought it may have been), solely to allow me to focus all my attention/energy on the procedure. In total, it has been around 7 weeks since I did any of my regular exercising, and I am really keen to get back in to it (some people who think they know me, may find that comment hard to believe). Now, I’m not talking serious heavy exercising here, I’m only talking about stretching and some light cardio work-outs, but anything is better than nothing. Doctor’s orders were to wait until a couple of weeks after returning home before starting back with the exercising, so I will try my best to hold off for another week (you will understand this more as you read on).

 

As I have stated before, I am not one to be open about my emotions or about how I am feeling (I have surprised myself with how much detail I have given so far), and to give a little insight in to how my mood may appear up and down from post-to-post, I will document any and all changes I experience from week to week. Now, I don’t envisage these changes (good or bad), to be long term or even permanent (however, if some of them are, I’ll gladly take them), ultimately all I want is to halt the progression I was having. So with that in mind, and to give a bit of context, if I can still feed myself in two years time, I’ll consider the procedure a success (any improvements are a bonus!).

 

Now on to changes I have noticed since returning home, they are in no particular order.

Whilst in Mexico I had no discomfort in my lower back, but this has returned within a day of returning home. In my mind, I’m putting this down to walking/gait issues, and the strain/effort I put myself through in getting about this way.

I have noticed a slight improvement in my hand dexterity and my ability to handle cutlery, and also a lessening of the numb sensation I had in my hands/arms.

I am now able to manage six to eight stairs before I start to drag my left foot up over the stair (except when I come out of the shower). Also, during those first steps, my left foot is landing flat and not ball-of-foot/toes first!

I am struggling to brush my teeth at night sometimes. This is a mixture of being able to stand up, and also to hold my arm at a high enough angle for brushing all area’s of my mouth ( this could be down to spasticity issues, resulting from my lack of exercising).

So, as you can probably imagine, based on these changes alone, psychologically, I’m a bit all over the place (but overall happy).

 

Now on to the hair loss issue. As I stated around day +10, I had started to lose hair. This was all from different area’s of my body, and only turned out to be a thinning of these area’s, and not total hair loss. Over the last week, I have lost around two thirds of the hair on my head, and anticipate it will all be gone by next weekend (hopefully, I enjoyed being bald before). I also have not needed to shave for over a week, this coming from a guy who normally gets a five-o’clock shadow everyday!

 

Finally, another note of thanks for all the well wishes and messages of support, that I have received from everyone. They mean a great deal to me!

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Day +13

My final post from Mexico!

I don’t have the words to describe how I am feeling, so I will just leave you with a picture.

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My new extended family, these people will always have a place in my heart.

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Day +12

Firstly I’ll give some more information about yesterday.

As you will learn when/if you come here, patience is a key ingredient during this process. We all had a lot of sitting about yesterday, waiting for things to get started. This had the knock-on effect of delaying our plans to  have one final get together before people started leaving, and hence leading to a later night than some of us planned. Details were exchanged, a good night was had, and some farewells were said as some people were leaving early this morning.

Two of the six patients are leaving today, three more patients (myself included), are leaving on Saturday, and the final patient is still making plans at present.

The final part of the process yesterday was the dose of Rituximab, and all patients made it through with very minimal (expected) side effects. The nurse, again, was very attentive, and was always looking after our wellbeing.

Paperwork was issued, along with any medication that was requested, and we were all wished farewell by the staff (friends!) who have helped us during this procedure.

A very nice, and very much appreciated thought, was a certificate (by the carers), issued to all the patients.

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Signed by all the other people who I've met during my journey.

Now on to today.

Between today and tomorrow, it’ll be a case of packing, tying up any loose ends, and some reflection on the previous 4 weeks for me.

Other than the first week (which wasn’t really an issue for me), I would say I have had a relatively straightforward experience during the whole procedure.

From what I am seeing in the shower tray and bathroom floor, I am starting to lose some hair. Slightly perplexing though, I can’t work out where I am losing it from! No doubt it’ll become more evident as time goes on, lol.

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