1.5 months post Round 2 - long overdue update

So I just can't believe how fast time is flying past since round 2 at the very end of September. Charring Cross signed me off work for the initial 2 weeks after the last infusion on 30th September 2016, following that I have been working full time, but from home, to avoid the general germs of the hospital I work in and amongst committed colleagues which it seems must be literally dying before they take a day off sick ... so i work in a bed of germ-ieness I guess.

I must admit no matter how good I felt I was easily reaching my limits after 30 minutes of standing. I didn't experience the vertigo or extreme fatigue like i had after the first round. I'm doing most thing's I'd like to do, and even a drink in the pub is a possibility ... I was just disheartened to find I could only pluck up the leg stamina for dancing to only 2 songs before needing to find a chair. It's early days and I need to be patient to eel the benefit in full from this round.

So this weekend I am off to Germany for a friend's 40th birthday party ... hopefully I will make it through the airport, praying for an A gate in terminal 5 then i could walk, but will just need to reach out for the mobility assistance if I'm departing from a B or C gate (terminal 5 Heathrow). Then after the party will be going to an Archive concert which at least is seated (I'm not a fan of this band, but i've been dragged into this, hope it's good regardless.

I am now working at work in the hospital 1 o 2 days a week because I don't want to become less involved and just disconnected from my team. I'd only just got back to doing 5 days in the office for the last 2 months before round 2.

What is incredibly frustrating is my poor core strength and I'm just so unfit. I have started some physio in harrow with a charity based MS centre. I've only done the initial assessment and am awaiting an email for some further appointments. I need to get back to the exercises i know from my previous physio at Hillingdon hospital, unfortunately just got distracted from this focus and stopped making time for the exercises. I hindsight it was stupid, but now I just need to get back on board.

Typing this reminds me that typing is tiring so I will have a break for now, but an update will be made shortly after returning from Berlin.

Lem Round #2 is done & all is good (piece of cake)

My Lemtrada round 2 was done on Wed 28 - Fri 30 September. It was strange as I was expecting to join others also receiving Lemtrada during my stay this time ... but no, there were others in my ward but none of them lemmies (2 having first fingolimod / Gilenya and a few other non MSers).

In contrast to my round #1 stay the wards on 10 north (Charing Cross Hospital) were quite quiet and a full night's sleep was possible (even after steroids). On day 1 it was a slow start waiting for blood & urine test results. Started the pre Lem steroids at 14:10 which was OK. I was ready-ing myself for some reactions, but nothing, I rested and avoided even getting a headache. Drank lots which should help avoid headache and dehydration I guess, and if nothing else, it at least gave me a reason to get out of bed. No rash at all, I couldn't believe it.

I felt more tired on day 2, but nothing significant. Still no significant rash or other reactions, just stayed in bed watching a movie on Netflix on my sisters ipad. The movie I watched was interesting 'The lives of others' 2006, I'd highly recommend it although the movie is in German with English subtitles. a few spots of a rash but was only noticeable as I was looking for it.

Day 3 came and went, and I couldn't believe it was all over, seemingly so easily. By the time we were leaving I realised how much I looked forward to getting back to my own bed, although I had rather settled into having the electronic reclining function in my hospital bed again.

Saturday morning I had slept longer than usual, i briefly woke to go to the toilet around 7am, looked for any rash to find nothing so crawled back into bed to sleep as long as I could. Only woke up again at 11am to find I was absolutely covered in the rash which I thought i had magically escaped. When i woke I was a bit in shock that I had slept through the rash development, Matt said how he had noticed the rash appearing but thought it best not to wake me up (maybe I would have complained at him waking me, but it would have been reasonable).

So I probably needed to take antihistamines for the rash until 4 days post (Wednesday).

Today I a nearly 1 week post and am starting to have some niggling MS symptoms like tingling in arms and legs come back when using hands for typing for example.

So far I'm pleasantly surprised how easily this has gone. I'm gonna try making weekly updates for a while to capture any changes as they happen. I have totally got  into a bad food binge lifestyle to try make myself feel better, today the Terry's chocolate orange didn't help my headache and just made me even more annoyed about the fact that I hadn't got onto the exercise bike to try and loose any of my belly weight. Trying to loose a stone, but I need to find the right mind set and stop buying nice sweet foods and eating out to even give myself any chance of changing my belly.

September 2016 - 12 month post round #1 (nearly) update

Yet again I've been slacking on the blogging front. Things have been going well. I have overcome a lot of fatigue, however my remaining complaint is how easily my legs are tiring when standing / walking. I need to maintain exercising to gain strength and stamina so I bought myself an exercise bike (quite a compact ne that can be folded away easily (which is good for my tiny little house). I'm just suffering in my mind by comparing myself to normal people freely doing normal exciting things, but maybe it's best if i distract myself from these moments of self pity. On the other hand I'm probably finding myself more tired  due to the logical fact that I am doing more than I have been able to do in the last year.

At the end of August I went to Germany for the bank holiday weekend, we had a busy schedule with meeting and catching up with Matt's friends and family before I got dates for  my Lemtrada round #2 in September (date pending). On Saturday we went to the Reichstag as we were invited by Matt's uncle & aunt, with Matt's mum to get a tour of the building. Because of the walking challenge for me we got a wheelchair to push me around in (totally not the image i'm looking for). So maybe I have to admit, the wheelchair was my saving grace and made the day less stressful, although the world from that height (everyone standing above you) is something that takes some getting used to (especially when the man pushing you is a virgin to caring for the feelings of the person in the wheelchair (we took some very sharp turns!). I was even handed over to Matt's mum and pushed into the ladies toilets ... what the hell! I can walk into the toilet if i'd need to! (should have been paying more attention to their German discussion) ... and the irony was, i didn't need to go, so i walked me and the wheelchair straight back out! :-D The sun  was out and I was baking hot, needed to find air-con/shade fast, so we went to a steakhouse for my probably last medium done steak in a while. Sunday we were going to a German family reunion of Matt's mum's side, was nice, baking hot day, so glad to be in a summer dress and flipflops! Mostly sitting and chatting so just my style, with buffet lunch. We spent the most part of the day there and then caught up with a couple of fiends with light bites for dinner and some fun playing with their 2.5yr old daughter.

Then Monday ... no plans ... just lazing around and movie for the evening. Just nice to do nothing, PJ day. So that was my jam packed weekend, it felt tiring at the time, but the more practice I got climbing up to the 5th floor flat the easier it became day by day. I was knackered and sometimes disappointed when I needed to rest myself, but as ever Matt was quick to point out how many things i had overcome that weekend.

So noe to get home and eagerly anticipate my Lem #2 admission date. Give me drugs, I'm ready!

July 2016, 10 months post - better every day but still not invincible yet.

OK so I have been away from blogging for a while (sorry), but only because I've been weirdly too busy to face typing at the end of the day. Things have been really good and improving all the time. I think I have become stronger and definitely more  resilient to fatigue. Don't get me wrong, every day I'm still hit by fatigue which limits me  where I need rest breaks from activity (my legs from walking or my arms and hands from typing or basic movements)

This week I think I will do a full week in the office at work, for the first time since having Lemtrada (I had been working some days at home). Less than one month ago I was thinking I was a long way off being comfortable and able to do 5 days a week in the office. Really it's a good thing that my workload at work is increasing which leads me to realise the importance of my presence for my studies/assignments. Honestly I'm glad to be back in the game with greater visual presence which I see now is so important to get the best results for my teams and colleagues.

So in mid June I was booked and ready to go on a two week holiday in the Dominican Republic with my boyfriend. But that all changed when my BF fell off his bicycle and broke his humorous/upper arm, 5 days before we were due to fly. In the end he  had surgery on the day we were meant to fly out and I went to Germany to stay with him for 1 week after he was discharged from hospital. Strange but this situation forced me into needing to be the stronger one of us for a change, haha I even had to change the bedsheets on my own (amazing how tiring getting the fitted sheet onto a king-size mattress when you are me ... so bad it makes me laugh at how quickly i'm done-in by this normally), well now i had to be like 'oh yeh i can do it , no problem', somehow the mind-set made it possible, and both me and Matt were impressed at my new-found resilience.

The good thing about Matt being the injured party this week is that now neither of us is insisting on going out :-D So we mainly spent the week watching the European Championship football games, even though England were a disappointing performance, it was fun to support Germany & Northern Ireland!

18 April 2016 (7 months post) - being positive & feeling the benefits

So I just got back from another short weekend visit to Berlin. The airport trips are getting easier to deal with, probably for two reasons: I now have the guts to ask to be helped at the airport to not need to stand in some of the queues for boarding . And secondly I'm walking better, I've had some physio (NHS) and advice on core strengthening and although I haven't been doing as much as I should have for the exercises I'm still feeling better due to having better awareness of how my posture had become so laid back and lazy. I'm shocked how many small exercises you can do laying down to gradually build strength ... but also didn't realise how tiring exercising laying down could be, gotta be a good thing, nothing's easy in the start.

06 April 2016 - a decision on HSCT and I'm wondering 'what if?'

So after what felt like the longest 3 weeks of my life since the MDT meeting where my case was presented for HSCT application under Imperial healthcare trust, I finally know the resulting decision. I spoke to Johnny (MS nurse at Charing Cross) yesterday and he informed me that I satisfy all of the criteria for HSCT at the moment, apart from the fact that my MRI shows no active lesions.

My initial reaction was to be relieved that there is no sign of new activity according to MRI evidence. I was also pleased that maybe reverting back to plan A (Lemtrada round 2 in September) is a good option and certainly a less stressful one to contemplate. I was refilled with feelings of hope that my Lemtrada journey was back on track and I just needed to continue exercising to get my body back into the best condition possible. My family,  friends and colleagues were happy for me and that was nice to feel their collective support.

After one day of knowing that I wasn't on the immediate road to HSCT I came to reflect on all the  things I had been trying to accept over the last few weeks, heavy self research into HSCT protocols, publications and research findings. Truthfully there was some feeling of disappointment. You know if you try to accept something which you are told is necessary, eventually you search for all the positive material you can find just to focus on the potential good things you can look forward to. Claims of curing MS and improving disability is like my ultimate dream come true, but even if some people have such great responses, this for some reason isn't by any means a promise for everyone that has had HSCT.

Still I will have a MRI in 3-4 months (prior to when I would have Lemtrada again) and if that showed active lesions they would switch to plan B  (HSCT application resubmission). So now I don' t even know what I want.

Anyway in the meantime, I can return back to my 'normal' daily life. My employer can be pleased to not see me back off sick due to new crazy treatment taking place at least in the medium term future I guess. Good news is now I'm going to get back onto project 'Carribean Get-away' and I can at least have something ordinary to look forward to.

Ah yeh just one other thing regarding the HSCT stuff, I came to realise that I hadn't had spinal MRI even though Dr Malik had attributed my symptoms to a spinal cord relapse (as he put it in the letter to my GP). So I am just trying to investigate how I can get MRI of my spine, as this could be the important missing link, maybe I do have active lesion(s) on my spine; in which case I could face deterioration just because we didn't look in all relevant places. So anyway I'll keep you updated on that front, I'm waiting for Johnny to return my call, I'm just not convinced it's going to be so easy getting an appointment for this MRI!

30 March 2016 - stuck in limbo and mad about it

I'm just so frustrated with not knowing where I stand regarding treatment now with HSCT or not. So since the meeting on 18th  March (regarding HSCT) I have had no update regarding what decision has been made if at all yet. Johnny (ms nurse) has been on leave due to the Easter break, and fair enough he is of course entitled to this. I emailed my neuro's sectary to see if I could find out that way. The sectary  was very helpful and enquired with my neuro, but she was told to pass on the message that I should speak with Johnny when he is back from leave.

Now I'm thinking, I wonder what does that really mean?!? I'm driving myself nuts contemplating if that means my case for HSCT was rejected and it's back to plan A with Lemtrada treatment or does it just mean they think I'm still shocked and devastated at the idea of HSCT. The nuts thing is i'm not even sure what decision I am hoping for anymore. Having researched HSCT and I did a lot of work to 'come to terms' with this procedure and the chemo, it somehow feels like it could be a disappointing waste of time and a bit of a let down to not have this opportunity.

I just wish there was anybody that would be able to fill me in, in the absence of Johnny. It's quite unfair, maybe they don't realise my days are filled thinking of this as soon as my mind isn't busy with doing stuff I have to do in usual daily life.

What's even more frustrating is that I wasn't the one to go digging for this treatment, its was my neuro's suggestion to convince me of having a relapse and switch to HSCT, I'm so angry now the neuro won't let me know how it went and now just passes the buck for Johnny to handle whatever the outcome is.

Rant over. Fingers crossed I will be able to update tis bad mood on Tuesday (still 5 more days!) :-(

24 March 2016 - 23 weeks post and things are looking up (I think)

Yesterday I traveled to Germany to spend Easter with my boyfriend and some of his friends. I was dreading going to the airport and doing all the walking through the terminal, which is tiring usually, but I struggle with the rush of things and knowing there will be times where I have no choice but to stand (in ques) or walk unknown distances (to the departure gate).

The last time I was at the airport was when I was returning from Germany at the end of January and this was when I was really suffering after my 'duloxetine adverse event adventure' / relapse (depends who's opinion you take) so the airport was holding quite a bit of fear and anxiety in my memory.

But anyway the airport went better than expected, not even so much a struggle but my legs were tired. I built the guts to board the plane by approaching the priority boarding que and asking if I could board because I struggle to stand for longer periods of time because of my MS … the lady at the desk was lovely and said of course not a problem … she then continues to expand on her sympathy and understanding by telling me how her nephew has autism and he has issues with standing and waiting and needs to face the same struggles in situations like this … on one hand I thought hmm thanks for comparing my disability to autism, but really I knew she meant well, She even came down and found me in the air bridge where there was a que just prior to getting into the plane and asked people to move to one side so that I could board. This was lovely but I  could have died from the embarrassment! Then once I was on the plane the guy behind me offered to lift my heavy hand-baggage into the overhead locker for me (which was also touching and very lovely).

In conclusion despite the dramas that could have been, I was actually alright and I made it. Overall I can probably think this went even better than usual - Lemtrada (1) MS (nil) :-)

My walking is better which means I'm working and walking harder than since even a while before I was on Lemtrada. At the end of each day I'm tired, but on reflection that's because I'm pushing myself more and more each day.

So I haven't talked much about work on here but in summary after Lentrada I was off work until mid December. Since January I had been having gradual return to work and since February I have been working full time from home, gradually building time worked back in the office. Now I'm back to nearly normal and overtime remains a part of my life again.

09 March 2016 (6 months post) - I'm not gonna make it to round 2! referred for HSCT instead?

So I saw my neurologist yesterday to review my 'urgent' MRI from a couple of weeks ago. Actually this appointment wasn't exactly what I had expected. My neurologist compared my latest MRI to a n MRI from 3 years ago (which is probably close to  where I was still on Tysabri and it was still working). The comparison between these two scans is obvious, clearly more inflammation now compared to back then, even though al the reports analysed them as stable when MRIs were only being compared to the last scan. Anyway to cut a long story short my neurologist is referring me for HSCT because in his words 'I'm supposed to be making you feel better, but I haven't done that yet' ... which isn't strictly true, I have felt worse than I do now. I know his hurry to do this is just in case the 'blip' I experienced in January reflects the fact that I'm still at risk of disease activity despite Lemtrada, and the longer the stem cell therapy is delayed, the greater the risk of the treatment being less optimal. As I'm fully mobile and my symptoms all have periods of worsening and then getting better (RRMS) I get the impression that this means I'm the ideal candidate for this therapy.

The issues I'm having contemplating this road of treatment:
*Scared of actually dying
*Fear and everyday anxiety contemplating risk of infection
*Living but battling being really sick during treatment
*The sacrifice of my current ability for a chance at a long term gain
* Pressures this will put on my family and friends
*Fear of loneliness and social isolation

The stupid thing is I am so instantly upset about this whole situation, but I still have a way to go before actually getting this treatment. My case will be presented at a meeting of clinicians next week, then I'm not really sure what happens next. I was told I could be looking at treatment by the summer (which doesn't really seem so far away).

I'm still a bit upset that I don't seem to be set on the road for a Lemtrada success story, even if it can't really be defined that Lemtrada didn't work for me, or was my  treatment intervened too quickly to really judge this?

So stunned and a bit in denial that I'm not a Lemtrada success story. Is weird I need to just get on with my life like I still planned to on Monday just passed, but at the same time I'm burying my head in research papers for  HSCT to try and assess the risk and convince myself that I will be OK and maybe this is an opportunity not to be missed!?!? :-s

04 March 2016 - pending MRI review, but feeling suddenly 'more well'

Following Lemtrada in September things were slowly but surely developing into better things. I haven't experienced an overnight miracle, but I was convinced there were tiny little things improving.
My walking wasn't perfectly normal but I was feeling the benefits of weekly physiotherapy and having greater awareness of how my posture should be and how to strengthen the core tummy muscles so that I'm not so wobbly. Regular exercise was benefiting me physically and emotionally, admittedly I wasn't doing so much, but I'd become so weak (too much sitting around) that even little muscle exercises were tiring. Because I have a full range of mobility it's easy to overestimate in your mind what you are able to still do. Avoidance never helped anybody and I just need to get my priorities straight and throw myself into working at my fitness.

Its amazing how much difference a good mood can make to my MS sometimes. I've always promoted the strength of positive mental attitude (especially since my diagnosis)!

23 Feb 2016 - thinking of the truth, and my neuro.

Today I got the letter my neurologist sent to my GP regarding our latest discussions, It upset me at first reading his next plan of action written down in black and white. I think I'm quite aware of the effort it would cost me to go through the processes for autologous stem cell transplant and honestly this prospect it quite upsetting to imagine the thing i might need to sacrifice for a chance at an overall gain in the long run. Some people would probably think I'm silly to consider giving up this chance, but for me I just wish I could be confident that there is no reason i should believe that I need to switch to another treatment.

The annoying thing from this letter is that the letter  doesn't even reflect the truth. I didn't have the time to properly express the feelings/sensations I had been experiencing since my 'duloxetine adventure' before my neurologist had already stamped me and my case with the ever so typical relapse explanation (of course I have MS and so of course if something changes that must be due to a relapse 'imagine the irritated sarcasm in my voice'). The daily pattern was too rhythmic throughout the day for me to believe that this had nothing to do with the duloxetine. The areas where I experienced numbness and pain relief in the night, were the exact same areas where I was suffering these intense inner burning sensations by the early afternoon. These sensations were on and off at the same times each day. The letter  is actually written as if I was really seeing benefits from the duloxetine but then I 'obviously' just started having a totally coincidental relapse. I can't believe he had the balls to say this to my face ... maybe just the narcissistic personality coming across and I should forgive him.

I really respect my neurologist and agree with the majority of things he has  ever done for me in the last 10 years or so (I have so much to thank him for)... but this time I just think he is wrong (doesn't happen very often). I need to believe in my own gut instinct and know in my mind that he doesn't have the correct information to provide him or anyone else with an accurate analysis of my situation.

I know all too well how sick I can make myself feel with fear and anxiety. I just need to set my focus elsewhere  until I have the MRI proof to know if this really could be the sudden end to my Lemtrada story. :-S

22nd January - Duloxetine begins, then ends quite quickly!

So as prescribed by my neuro for neuropathic pain (feels like I have a UTI even if I don't, feels like this every day mostly, so a small living nightmare).When taking the duloxetine I had some bad side effects where i felt sick all the time and couldn't eat much if anything at all. I had trouble sleeping  but if i did wake up in the night I did notice some areas of numbness and the stinging uti-esque feeling was actually gone by the 3rd night and i was amazed and thought i needed to try and give this drug a longer chance. Well that feeling didn't last  long by early afternoon the next day when i had intense burning sensations in those areas i had felt to be numb the evening before. I couldn't believe how cot i could feel inside even with my skin being cold to touch, and no fever. I took the duloxetine the last time on Monday night (4th dose only), by Tuesday evening I had the ambulance at my house after calling 111 for advice about these symptoms. Yeh I just had to sit it out and calm down as the stress wasn't doing any of my symptoms any favours. After a week of  stopping i was recovering but still has strange sensory symptoms. Got an urgent appointment with my neuro, then the bombshell was dropped, was assessed to be probably new relapse activity and urgent MRI requested to be reviewed with my neuro asap.

So now I learn urgent  mri still takes 2-3 weeks (even though my neuro wanted it done within 1 week). Neuro suggests if new MRI activity then should consider bone marrow transplant / AHSCT. So that's a bit extreme and so I have everything crossed that my neuro has got it wrong this time around, but he is  the expert I guess ... possible scary times ahead (and I barely got half way to Lemtrada round 2! ...  but still a possibility with any luck)

Anyone who reads m blog regularly, probably knows i'm quite bad at giving timely updates, but soon after 1st March MRI, I'll be right back here typing, because now this could get interesting :-S

12 - 14 weeks post - a UTI for Xmas

So around 18th or 19th December i became suspicious that I might have a UTI, was at the hospital for a urology appointment anyway so popped by the ms day ward and asked if they could dip stick my urine (I had done this at home first and thought possible trace leukocytes, but the nurse at the hospital said it was clear), so i left it at that. Then the following day i had an appointment with the nurse at my GP surgery who does my monthly blood & urine and there she agreed i may have an infection, with 1 week until i flew to Berlin for new year the GP decided to give me 2 weeks of antibiotics. UTI felt better with AntiB's, but not 100% feeling right still. Not sure what happened but over the whole of my2 week xmas holiday off work, I was sick with something, I felt unwell whenever I ate something ... not sure what  i had  done to deserve this but it was miserable, it's so depressing to not enjoy eating and especially at Xmas! (the cherry on the cake). I still didn't feel right after the AntiBs were finished, so it finally comes to light in my neurologists and urologists mind that actually i haven't been suffering with recurrent UTIs for the past 2 years as actually there is no really lab evidence of these infections, usually they were treated with AntiBs before the culture came back and showed no culture growth. The new idea from my neurologist is terrible misdiagnosis for the UTIs and really this is neuropathic pain (I was hoping this wasn't the case because it feels a bit too much of a personal hit for the ms chapter that i was hoping to avoid for a bit longer) but at least this opens a new door for symptomatic relief along with some new drugs to try, I'll save the details of what happens next for the next post (too much typing for now, but I'll be back with part 2 of this chapter very soon).