Thursday, 25 February 2016

Month 9 MRI EXCELLENT NEWS on initial findings


25th February 2016

 

I seem to be talking a lot this week, but it’s been a busy one with the Physiotherapy sessions and the month 9 MRI scan. I had my 2nd session with the Physio on Tuesday evening; it was a roaring success in relation to the tennis elbow injury to my left arm. I now have harder exercises to do as many times as I can each day and instructions that I have to keep doing them until it hurt, not just stop at 10 reps and call it done.

The shoulder was also on the same miraculous improvement level until I fell down the stairs that morning, I’ve clearly wrenched something that hasn’t dislodged the impinged nerve it squished it a bit more. Two days on and it’s starting to improve again but yesterday morning was agonising.

Fortunately I needed to be at the MRI unit by 8:15am so whilst it made it difficult to sleep it also meant that I had no problem getting out of bed early enough to be at the hospital in plenty of time for my MRI. My Dad always told me to ‘Play the glad game’ I’m glad that even though it hurt it did get me out of bed.

The MRI was gloriously uneventful the cannula went in first time, 4 scans in the machine were just over an hour in duration and the lovely Radiologist found me the ‘Rocking All Over The World’ CD to listen to while I was in there.

I sent an email this morning to the lovely Dr C asking was there anything exciting on the MRI

To  the lovely Dr C and  the lovely Margaret my MS nurse:
Hi Ladies just to let you know the MRI was done yesterday morning.
If there’s anything exciting, like no new lesions, no activity brain and neck are suddenly ‘normal’ please let me know so I can sing and dance and tell the world J
I guess if there’s something sinister I should know too but I’m hoping there’s nothing like that J

 
I got a reply back really quickly from Dr C

Reply from the lovely Dr C:
Not yet reported
Had a look - no change as far as I can tell (perhaps a bit less conspicuous)
No new lesions

 

It’s not a full formal review, but quite honestly I’m thrilled to bits with the result. This is everything I had hoped for when I chose to have this treatment. It exceeds my minimum baseline of what I wanted from Lemtrada, that metaphorical ‘Line In the Sand’ that MS was not allowed to cross. Right now I have it on the run and I’m driving it back into the sea.

  • NO progression
  • no new lesions
  • Existing damage less conspicuous!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I am winning this war!

Tuesday, 23 February 2016

What's that falling down the stairs ? That'll be me then

This morning I fell down the stairs - nothing to do with MS, just slippery socks, carrying a box and not paying attention to what I was doing properly. I'm not entirely sure my left arm was supposed to be bent that far back at that angle - BLOODY OUCH


Made it to work - still awesome and waiting to see if we are the 'Big Business in Berkshire' that David Cameron is visiting today I will put money on now if it's us, it's not going to be the Bracknell office he will be visiting.

Monday, 22 February 2016

Week 40 - Month 9 blood results available


It would appear all those lovely little lymphocytes that were breeding like rabbits have now committed a mass suicide having resolved my infection, sadly this month they have slumped back down to 0.79 (contrary little bastards) Everything else that was elevated fighting the infection is now back down to normal levels again and I feel great regardless so I’m not going to stress over it.

 
Lower Level
Upper Level
Pre-Lem BASELINE
December
January
FEB CD Cell Breakout
February
Blood
 
 
 
 
 
 
 
Haemoglobin
120
160
144
130
138
136
142
WBC Count
4.0
11.0
11.9
9.8
11.6
11.9
8.8
Plt count
150
500
289
263
336
279
292
Rbc count
3.8
5.8
4.67
4.32
4.32
4.45
4.46
Haematocrit
0.36
0.47
0.445
0.417
0.42
0.42
0.434
MCV
76
103
95.3
96.5
97.4
94.4
97.3
MCH
27
32
30.7
30.1
32
30.7
31.9
MCHC
300
360
323
312
329
325
327
RDW
11
16
13
12.5
12.8
13.1
12.7
Hypochromic  RBC %
0
2.5
0
3
6
0
0.5
Neutrophils
1.8
8
8.09
7.94
9.4
9.76
6.95
Lymphocytes
1.3
4
2.5
0.88
0.93
0.95
0.79
Monocytes
0.2
0.8
0.83
0.59
0.7
0.71
0.62
Eosinophils
0
0.8
0.24
0.2
0.23
0.36
0.26
Basophils
0
0.3
0.12
0
0
0
0
Liver Function
 
 
 
 
 
 
 
Bilirubin
0
21
9
5
3
 
8
ALT
0
60
21
14
16
 
17
Alkaline Phosphatase
30
130
51
49
50
 
44
Albumin
35
50
45
40
43
 
42
Thyroid Function
 
 
 
 
 
 
 
TSH
0.35
4.5
 
3.4
1.88
 
2.5
Urea and Electrolytes
 
 
 
 
 
 
 
Sodium
133
146
139
147
143
 
140
Potassium
3.5
5.3
4.7
4.3
4.4
 
4.6
Urea
2.5
7.8
3.8
3.2
4.4
 
5.2
Creatine
44
97
62
63
70
 
75
eGFR per 1.73sq m
60
99999
>90
>90
>90
 
>90

 

Updates from the world of me this week don’t include last week’s ‘getting my bitch on’ thing, in fact things in my world this week have been pretty great.

On Friday I decided that it was probably wise to speak to a physio and test my ‘would stretching me’ theory out and see what happened. I saw a lovely lady at Berkshire Physiotherapy Centre who within a few minutes of checking me out had diagnosed the two problems I have with my arms / shoulder. I have an ‘impinged nerve’ in my right shoulder, and my left forearm is ‘Tennis Elbow’ or as it was pointed out to me ‘RSI – Repetitive Strain Injury’ otherwise known in less polite circles as ‘wanker’s cramp’. Basically it’s all my own damn fault, my posture is appalling particularly when I sit and read books. I tend to sit on a low chair, lean forwards balancing my elbows on my knees (hence the trapped nerve in my right shoulder) and I hold my iPad in my left hand (so I can use my right hand to pick up my wine glass). I’m now sporting some rather attractive blue tape on both offending body parts, have a list of exercises that I have to do as many times a day as I can, and instructions to sit up / stand up straight and stop slouching!!!!!!

I’ve been very vigilant about doing the exercises and just 3 days later I’m already seeing an improvement! My mobility of both offending body parts is significantly improved, the pain levels drastically reduced. I have another session tomorrow night where I’m hoping to get a gold star for effort, and hopefully the blue tape changed as it’s peeling off a bit in places now – I’m also hoping it can be replaced with something more exciting, like whatever they put on kids hopefully – I’m holding out for Minions or Mr Men on replacement tape.

On route to the physio my car had a major health set back – the warnings started flashing and pinging to say ‘Vehicle Pollution System Failure’ even to me as a person who hates to get my hands dirty that one was obvious – the exhaust was FUBAR. I limped it home and waited for business hours to get it booked on for a repair. Our closest Kwik Fit were absolutely amazing, it was just a loose seal on the pipe bits which they did for no charge (they noticed I needed a new tyre – which I had planned on mentioning any way so what could have been a HUGE bill was only £90 in the end for a new tyre and wheel balance + a mended exhaust YAY (probably helped that I was offering to buy them coffee and cake from Starbucks because they were being so great)

The weekend was quiet and restful once the car panic was resolved, actually it was a full on lazy weekend, we deserved one of those. We finally got round to hanging my Mum’s paintings on the walls in the lounge. They haven’t been hung up since September 2013 when we took them down from Mum’s old house and shipped them to the Sunrise Care Home in Solihull when Mum moved in 4 weeks before she died. After Mum was gone the paintings went to my brother, Ian never got round to hanging them up and then Ian was gone too and they came to me. If I’m honest I’ve probably been procrastinating a little about putting them up. They look beautiful and we designed the room around them being up in there, but it breaks my heart right now to look at them and know what I’ve lost that brought them to me.

This week is going to be full on with Work, Physio again Tuesday evening a MONSTER MRI Wednesday morning on my brain and spine. I’m looking forward to the weekend again already and it’s barely the end of Monday.