Monday, 25 January 2016

Week 36, 8 months post YAY


Week 36 done and dusted YAY.

I had night sweats again over the weekend for the first time in a long time; it might have had something to do with the heating being on full blast because it’s been quite cold so I’m not really concerned.

A very busy weekend with the Heating being repaired (again – 3 times this week the Gas Care people have been out)  A trip into London on the train on Saturday – date night done properly for dinner at Steak & Co near Leicester Square and then Hangmen at The Wyndham Theatre. We had amazing food and then laughed ourselves silly watching Hangmen. (thanks to JmC who booked awesome tickets for us to watch that) We got home late and then stayed up until ‘stupid o’clock’ before bed which meant it was gone lunchtime when we finally surfaced on Sunday (I will probably pay for that later this week)

I’ve requested Thursday and Friday off work this week as the new flooring for the upstairs of the house is ready and booked in to be fitted Wednesday – Friday, we are very excited about how it will all look and feel when it’s done, the only carpet left in the entire house will be on the stairs as a 150 year old cottage = wonky stairs so the antique oak flooring isn’t going down there – but YAY the carpet is ‘Aubergine’ so a very deep purple (one of my rare ‘girlie’ things is that I love love love purple and Gareth has given in and let me have some)

I’m a little wobbly and off balance after the excitement and energy expended over the weekend, a couple of early nights should sort that out easily enough (assuming I have the common sense to have them)

In other random news I’m no longer a ‘dumb blonde’ I’m now a red head – quite ginger in fact after finally getting round to doing my hair and hide the grey ones, I needed a little colour in my life and it really does make a quite spectacular change.


As you can see from the bags under my eyes the weekend has taken a bit of a toll and I look like an old bag.

I have my next appointment with Dr C my neurologist next week on Tuesday afternoon. I’m hoping to continue my ‘Star Pupil’ rating with the progress I’ve made over the last 8 and a bit months since I had my first round of Lemtrada. I’m hoping that she will have news of when round 2 will happen and also the bloods / MRI requirements for round 2. I suspect I will need another chest X-Ray to confirm I still don’t have TB, same for bloods to confirm I still don’t have HIV, probably an out of cycle smear (BOOOOOOOO – yes girls we can’t have any pride when it comes to these things) to confirm everything is okay at that end and the 8 vials of blood for all the other bits and bats that they test for.

I had my oxygen therapy Saturday and met a couple of lovely new people, one an MS’er who hadn’t heard of Lemtrada before, and another who’s having HBOT for Fibromyalgia (it works so well on so many things) I’m still doing my bit as a spokesperson for Lemtrada as that BBC Panorama HSCT program that was aired last week seems to have stolen all the limelight. Whilst HSCT offers another option for MS’ers to halt / slow progression, there was very little about previous treatments those patients had received and whether Lemtrada was ever offered to those people or received and failed was not established.

HSCT is currently on my list as my ‘last resort’ if this had not worked – that said, by the time I’ve had round 2 and if something as going wrong (crosses all available extremities, throws salt over my shoulder and crosses the path of a black cat) then hopefully by then Ocrelizumab will have completed the phase 3 trials and been approved in the UK by NICE to offer another option before the final resort. Only time will tell I guess, and right now it’s all a bit moot as Lemtrada has done an amazing job of stopping my MS dead in its tracks (crosses all available extremities, throws salt over my shoulder and crosses the path of a black cat - again) – but you should always have a Plan B for these things. (the project manager in me demands; contingency, risk mitigation and an alternate delivery method if required etc…..)

So tediously normal and suspiciously like an MS free life as always, hang on in there everyone xxx

Tuesday, 19 January 2016

Week 35 - Month 8 Bloods published


Week 35 now, I feel like I’m being swept along on a tidal wave of time with no way to apply the brakes.

MS wise everything currently remains uneventful and rather dull. I’m bobbing along relapse and symptom free, whilst I’m aware that I still ‘have MS’ I certainly don’t feel like I ‘have MS’ any more.

My blood results are back for Month 7 – A bit funky this month wil high White Blood Cell count, high Hypochromic RBC% and also High Neutrophils which are all as expected bearing in mind I’ve had the winter lurgy over Christmas and felt pretty crappy with my body fighting the infection. Having watched those video’s about the immune function the levels don’t surprise me or concern me, and I’m sure the team would have something to say if it concerned them.

 
Lower Level
Upper Level
Pre-Lem BASELINE
November
December
January
Blood
 
 
 
 
 
 
Haemoglobin
120
160
144
141
130
138
WBC Count
4.0
11.0
11.9
8.3
9.8
11.6
Plt count
150
500
289
269
263
336
Rbc count
3.8
5.8
4.67
4.48
4.32
4.32
Haematocrit
0.36
0.47
0.445
0.434
0.417
0.42
MCV
76
103
95.3
97
96.5
97.4
MCH
27
32
30.7
31.5
30.1
32
MCHC
300
360
323
325
312
329
RDW
11
16
13
12.5
12.5
12.8
Hypochromic  RBC %
0
2.5
0
1
3
6
Neutrophils
1.8
8
8.09
6.72
7.94
9.4
Lymphocytes
1.3
4
2.5
0.66
0.88
0.93
Monocytes
0.2
0.8
0.83
0.5
0.59
0.7
Eosinophils
0
0.8
0.24
0.17
0.2
0.23
Basophils
0
0.3
0.12
0.08
0
0
Liver Function
 
 
 
 
 
 
Bilirubin
0
21
9
5
5
3
ALT
0
60
21
15
14
16
Alkaline Phosphatase
30
130
51
44
49
50
Albumin
35
50
45
42
40
43
Thyroid Function
 
 
 
 
 
 
TSH
0.35
4.5
 
3.3
3.4
1.88
Urea and Electrolytes
 
 
 
 
 
 
Sodium
133
146
139
139
147
143
Potassium
3.5
5.3
4.7
4.4
4.3
4.4
Urea
2.5
7.8
3.8
5.8
3.2
4.4
Creatine
44
97
62
78
63
70
eGFR per 1.73sq m
60
99999
>90
>87
>90
>90

 

In other news 2016 is now being referred to as ‘Crash Year’ – not MS crash, but CAR CRASH – This morning I killed the courtesy car I have while mine is in in being mended from the prang on Jan 9th. Fortunately nobody hurt, just broken car parts once more. This one is going to be fun with insurance as it was provided by the insurer or the last man who hit me not my insurer which seems to have melted the rental agencies heads – I’m now driving a replacement hire car for my hire car and for the first time in the history of forever - a motorbike killed a car and remained undamaged.

We are off into London this weekend to go to the Theatre to see Hangman, we haven’t ever been to the Theatre together which is most odd given that my husband was a professional actor for many years, helped run a theatre company and produced a number of performances as well as starring in them. I must have had a brain fart when I asked Gareth if he fancied it (thinking he might not) his response was he’d go to a theatre to watch a performance of ‘opening a door’ (it’s been a VERY long time since he worked with Judy Dench and Paul McGann – that’s my story and I’m sticking to it)

So 2016 so far has been SMASHING ….. let’s hope that I’m done now on the breaking cars front.