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).

11 Weeks Post Update - SORRY i'VE BEEN A LAZY BLOGGER

OK so 11 weeks post Lemtrada round 1 and lots seems to have been going on lately. In the beginning I was reluctant to report my lack of improvement and I just wanted to wait and see for something better to say (I know this isn't the point of blogging but I'm gonna get on top of this and get doing some back dating of posts).

So just before 10 weeks post I went to Berlin (my boyfriend is German and had mostly stayed with me since the Lemtrada week). So in Germany I had a busy schedule of people to see. First I went to my work xmas party on Fri night, it was in a night club and unfortunately this proved to be a physical challenge too far, so basically I sat and listened to music, it wasn't so bad but it taught me a lesson of my limits for now - I'm not invincible yet and still easily very stiff legged and exhausted!

On Saturday I met up with a few friends for dinner and ouzo at a Greek restaurant and it was a great evening out. Sitting, talking and laughing (that's my style) and I even dared to get very drunk for the laugh (I knew my liver was working well and I had 3 weeks for my liver to recover in time for the next blood test).

Otherwise biscuit baking and meeting with friends was good to get away from home where my slow boring lifestyle needed some new challenges for a weekend. I must admit it was tiring, but I needed it!

11 Weeks post now and I went to the capital FM Jingle Bell Ball at the O2 arena, was a challenge to go across London on the tube and then walk to the O2 and round to the entrance I was allocated for my seats (the opposite side to the entrance). I managed by having dinner at a restaurant half way round. As my bf has kindly informed me this was a real triumph for me and was the most physically challenging thing I had done since Lemtrada and even probably a long time before that.

In summary of my progress so far I am still weak and sometimes easily challenged, however I'm getting gradually better all the time (need to  focus on the small things, nothing like this will recover overnight). I'm still working from home to avoid the germs of the office and the additional effort to get into the office, but my working ability is also slowly improving (with regards to stamina  typing and using a mouse and looking at the computer)

3-4 Weeks post - the garden fence needs painting.

So before it gets too cold outside I needed to paint the fence to protect it for the winter. My parents had mentioned they would get it done and I began to realise if I wasn't going to do it, it probably wouldn't get done this year now.

So I set myself the challenge while the forecast was predicting dry days, it was going to be hard, but i needed to embrace optimism!

It took enough energy just to get dressed to go outside in the cold, but i did it!

 

I completing painting the fence over 3 days spread over 2 weeks due to rainy days after my first 2 days, needed to wait to do the last 3 panels!

 

Anyway this was the move forward that helped me believe i was able and ready to get moving nf trying to get my body moving again. After it I was knackered and  needed recovery period the next day but you know what they say 'no pain, no gain'.

 

Week 1 post update_blog catch up

Week 1 post: The first week at home I took resting to a whole new level. I didn't want to push myself into exaggerating my MS so I just rested all week, I did get up every day, had a breakfast and a bath and got dressed into another set of pyjamas! I did have transient worsening of some of my older ms symptoms, I got tingling in my legs  after doing nothing but this is usually only something I get when I've done a lot of walking / standing that day. I had a short attention span and was really easily annoyed by any little thing and frustrated almost instantly if something wasn't as easy as it previously been (I think this is just an exaggeration of my usual personality maybe). The rash stopped coming back on day 4 or 5.

Day 6 & 7 first weekend after Lemtrada

Friday evening I watched the telley, fell asleep in front of the telley and finally made it back upstairs to my own bed for what felt like the most greatly anticipated night's sleep ever, tranquillity at last! So I was glad to get back home and to sleep in my own bed in peace, although I can't deny that for a few seconds I wished my bed still had electronic sitting/reclining functions and somehow I was a little nervous to sleep alone (I realise this was silly because the worst that could happen was to get the rash back, which I expected anyway, then I just needed to keep up the chlorphenamine levels, simple!)

 

above is a picture of the rash I had just before I went to bed, it was unusually just on my thighs?

When I woke up on Saturday I was surprised to find there wasn't a rash present at all, I did a quick body check and it was true, i survived the night, no rash to be seen and i felt quite good. I took the chlorphenamine to avoid the rash reappearance, later that day when the second dose of cholophenamine was due the rash had started to come back quite rapidly, showing me that I needed to keep on top of the meds, the rash wasn't over and done with yet. So I took 4mg chlorphenamine every 4-6 hors whenever i saw a few of those spots come back.

Sunday didn't feel so good, I was finally feeling the comedown from the IV steroid, IV hydrocortisone and IV piriton junkie lifestyle that had helped me feel so good in the hospital. My legs felt numb and tingling and this was  unusual for me these days, I had done nothing and my legs felt like i had be standing or walking around all day yesterday. It took me back to feeling like I did before I even started taking Tysabri (bad times) 7.5 years ago. My neurologist had warned my MS could feel like it gets worse temporarily, but this was something i hoped i would get away with (over optimism).

Anyway the feeling in my legs passed and i slept it off overnight (to my relief). Not much to tell, i just rested. Here are some rash pictures from the weekend to make this a tiny bit more interesting :-)