Wednesday, 3 June 2015

Lemtrada update - nearly 2 weeks post

Hi there


Apologies it's been a few days, it's all been a bit frantic.


MS / Lemtrada status


What I don't have
  • I don't have Fatigue
  • I don't have cramps or spasms reported by others who've had the treatment
  • I haven't had anywhere near as much foot drop as normal
  • Spaghetti leg isn't collapsing underneath me, but it does sometimes go a little weak
What I do have
  • I have some sensation back in my left arm - it's not proper  feeling, but it's better than it's been since November last year
  • I also have most of my feeling back in my legs again which is brilliant
  • ITCHIES ..... Oh lord the ITCHIES in both my hands and wrists - it feels like Lemrash itchies which seems to come on in the evening and is resolvable in about 20-30 minutes with anti-histamine
  • I DON'T HAVE ANY COLD OR OTHER TYPE INFECTION - which I think is a pretty major win after the time at the hospital with Ian before he passed away, and the number of people who spontaneously hug me on sight.
I'm still taking all my vitamins and minerals, my antivirals which are part of my post Lemtrada regime. I had 2 oxygen treatments last Monday and Friday but I did cancel this weeks not knowing where I would be and not wanting to let people down.


I'm emotionally wrung out, with losing Ian, treatment and being mad enough to sell our home through all of this, I guess it's to be expected.


Love and non germy hugs to you all xxx

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