Bionic Woman

Was at the specialist today and he's confirmed what I fearded - I'm currently having a relapse. It started a few days ago in earnest I think, before my LDN consultation and starting LDN, but I was hoping it was just a few 'bad days'. In hindsight (20:20 as always) I think that was wishful thinking. Walking has been pretty bad today and having trouble lifting my left foot off of the ground when walking and as a result my toes have been dragging. The physio gave me a great electric muscle stimulator to help with this - two electrodes attached to different points on my leg and a pressure switch under my heel meaning and as soon as I lift my heel off the floor the little box I wear round my waist gives my nerves a little 'shock' which stimulates them and moves my foot and my toes come off the ground. It's a very strange sensation to get used to and not the most comfortable (although not painful) and it's bizarre having something else control my foot, but it's helped my walking a lot today. Hopefully I won't need it for too long. Although it is rather cool and makes me feel a little like the bionic woman. Again, childish as usual ; )

Had to get my blood taken again today unfortunately. Grrrrr. Perhaps my new Twitter name should be pincushion instead of miss! On the plus side, when I was weighed, I'd lost over half a stone since I last weighed myself a month or so ago. Quite a few people have commented on it lately but I didn't think I'd lost that much.

There was talk of putting me on steroids next week when blood and urine tests come back to help with the relapse as I'm finding walking difficult and I'm worried my legs will buckle underneath me or I'll fall. Needing the loo every 20 minutes and bad legs don't provide for a terribly fun day. I've also been advised to start DMT (disease modifying treatment) as the number of relapses and frequency now suggest my MS has reached the stage where it requires this. Everyone has their own opinions on drugs and treatements, but for me personally I have LDN and its possibilities and feel Copaxone may complement it, but will speak to Dr T before going ahead. I've ruled out the interferons as the side effect lists put me off completely and I don't feel they're the best way to treat MS.

Not feeling terribly wonderful today so a short post, of which you're no doubt thankful. LDN dose again tonight :) Will keep you posted.

The First 24 Hours

My first 24 hours on LDN :D I've switched from being impatient for my consultation with Dr Tom to roll round to being impatient to have a few weeks of taking LDN under my belt to better judge how it'll work for and with me. See a theme developing there?

My poor colleagues have been hearing nothing but LDN for weeks and weeks now, and it didn't change today either! Everyone that asked how I am got an excited torrent unleashed upon them, telling them I'd taken my first dose and how much I was looking forward to my body getting used to the LDN and how it'll react. I must admit I work with a great bunch of people - I've been very open about my MS and they've been very supportive asking me how I am and signing the online Scottish Parliament and Downing Street petitions for LDN trials on the NHS. I'm afraid I probably talk their ears off a bit about it all, but they suffer it well and I'm very grateful :)  

Didn't sleep much last night, but that was due to the excitement of finally having LDN. Terribly childish, I know! Afraid my symptoms have been pretty bad today - my legs haven't wanted to co-operate and my walking's been worse than normal. Cognitive abilities went downhill today too. I was fully prepared to feel worse for the first couple of days and expected it (then if I didn't feel worse, it'd be a bonus). It may be just coincidence that I'm having a 'bad day' symptom wise on my first day of taking LDN as I am prone to bad days without any warning and it's been a pretty stressful week, especially with not much sleep last night. All in all, I think there are a few factors to blame for my 'bad day' but I'm sure I'll be right as rain very soon. Either way, I'm taking it in my stride - not literally though as my stride isn't terribly elegant today ;) 

Tai chi class was a bit of a struggle tonight with my legs being wobbly and more concentration than normal was needed to move through the form. It's so relaxing and energising though and was well worth the extra effort. Over time it strengthens muscles and may help my legs. At the moment, I find it of great benefit in the morning to gently ease my stiff muscles into moving more freely. Helps relax me in the evening too. My hands tingle as I move through the form (well, what little I've learned so far!) and I feel good. It's great to feel good and have nothing on my mind except relaxing and following the movements. I'm in my own little world for an hour. Some who know me may argue I'm in my own little world all of the time!!

On the plus side, I had no bizarre or disturbing dreams last night. They were vivid, but that's nothing unusual for me. Also, I've had no side effects whatsoever except for the aforementioned 'bad day' and took my second dose before sitting down to tap this off on my laptop. The poor thing's seen a lot more action than usual of late! All in all, I feel the good news definitely outweighs the bad news :D 

Another positive: on the MSRC website, there's a new article on LDN in their Low Dose Naltrexone - Latest News section:  http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=1306&CFID=1938348&CFTOKEN=99797465  The article concludes from a preclinical investigation of mice given LDN that, "These results imply that endogenous opioids, evoked by treatment with LDN and acting in the rebound period from drug exposure, are inhibitory to the onset and progression of EAE, and suggest that clinical studies of LDN are merited in MS and possibly in other autoimmune disorders."

Off to my MS specialist tomorrow morning. Afraid I'm feeling rather bolshie at the moment; my tolerance for the amount of tests and poking and prodding of my limbs I'm always subject to by my neuro etc is falling rapidly. I'm not sure how my specialist will take the news that I'm now on LDN. Something tells me it won't go down too well. Tough! I'll be my charming self as always though.

Anyway, off to catch up on the beauty sleep I missed last night ;)

Now My Story REALLY Begins........

My LDN :D

Limped off to the pharmacy during my lunch break today and collected my LDN. For some reason I assumed I'd be given it in tablet form, but it's a liquid! Easy peasy to administer and I'm pretty sick of swallowing pills.

Having worked in a refractive surgery clinic for a few years in the past, I'm used to filling up syringes so it's very easy (dexterity permitting).

And so it begins. Obviously I have nothing to report so far as I've only just taken my first dose around 30 minutes ago. Well, nothing to report except for the taste - it's vile! It can taste as awful as it likes if it works though!!

Who could've thought the contents of this glass bottle have the potential to change my life if it lives up to the anecdotal evidence so far? I'm not getting my hopes up or looking for miracles, but any improvement in my quality of life would be amazing. I've been grinning from ear to ear all afternoon and I feel as though a weight has been lifted from my shoulders - I was worrying about if I'd be found suitable for LDN, if it'd 'work' for me, if I'd suffer another relapse in the meantime and generally felt sick to the back teeth of having MS and everything that comes with it. Rose-tinted-bespectacled as it may sound, I feel so much better now; I feel in control for the first time. What'll be will be. MS rules my life day to day - it determines if I feel good or bad and if my body will co-operate or not on any particular day, even if I try not to let it, live positively and try not to let my MS get me down, it's inevitable from time to time. I now have a weapon, as it were, to fight my MS. 

I've always found it particularly strange that I refer to MS in the possessive - 'my MS'. However, on an introspective day I realised it perhaps isn't quite so strange after all; MS is different for every person who has it, and it presents itself in a multitude of different ways, so how MS presents with me is unique to me, therefore it's 'my MS'. That's my logic for you! I suppose it also suggests a certain level of acceptance in that I've admitted it as mine. Perhaps I've been lucky in that as soon as I developed optic neuritis I knew it meant MS (due to the experience of working with ophthalmic surgeons) and accepted it without having to go through shock and distress first. I've no idea why I reacted like this, but I'm grateful nonetheless. This has afforded me time to formulate a plan of attack (not sure how to put that more succinctly).   

Anyway, enough introspection for tonight! Apparently I have some very bizarre dreams to look forward to. Considering I already have weird dreams, I'll probably have a dream akin to an acid trip! 

Ever the optimist, I sense good things to come...........I'll keep you posted!

Success!!

Just back from The Essential Health Clinic. Dr Tom's started me on 1mg of LDN daily. Over the moon! :D It's a low dose initially, and will be increased if required; it's a bout finding the correct dose for each patient. Unfortunately the pharmacy was closed for the evening, but I'll be off there at lunchtime tomorrow to collect my LDN. Can't wait!! He's also given me Barlean's Ultra EPA Omega-3 capsules (lemonade flavour, how cool!), and Baseline am & Baseline pm. Hopefully I'll be feeling an improvement soon.

Bloods were taken for my Uric Acid and Vit D levels. Vein in my hand blew again as usual and it's a bit on the sore side now (it's my only vein that provides blood easily and it always does that). Silly me forgot to have dinner before I went and needed a cuppa and a biscuit to bring my sugar up a bit. Terribly embarassing! Also opted for the Nitrotyrosine blood test (Tyscore Assay) which can detect disease activity in conditions such as MS: http://tyscore.com/

An article appeared in the Evening Times yesterday: PLEA TO FUND DRUG HELPING MS SUFFERES - http://www.eveningtimes.co.uk/news/display.var.2533158.0.0.php

Just a quick update; I'll let you know how I get on as of tomorrow. Grinning like the Cheshire Cat. Woohoo!!