Me, My MS and I


The First 24 Hours

My first 24 hours on LDN ūüėÄ 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 ūüôā

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 ūüėČ

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 ūüėÄ

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 ūüėČ

Tai Chi

Went to my first tai chi class tonight. Was a bit apprehensive, what with the reduced mobility, poor balance and stiff legs at the moment, but it was surprisingly easy and relaxing. The movements are gentle and flow easily, with your mind concentrating on that and nothing else. I felt myself relaxing very quickly and forgetting about my MS, and let’s face it – a highly strung gal like me needs to learn how to relax! I’ll definitely be doing this every morning to relieve the stiffness when I get up (my own special little version of whole body morning glory!) The muscle spasticity in my neck, jaw and shoulders has eased a bit too. Here’s hoping my memory copes with the week between lessons! The instructor and all the people there were very nice too. Met a lady who’d recovered from cancer, so it’s worth remembering there are people worse off than me too.

A little bit of zen in the life can only be a good thing ūüôā

First Hurdle

Received notification of my appointment today – 26th November!! Bit of a longer wait than I expected and¬†rather disappointed, but LDN’s in high demand, and I’m sure there are many that need it more than me. There’s a possibility of a cancellation in October, fingers crossed!

On the positive side, it isn’t completely cost prohibitive – ¬£120 first consultation, ¬£80 for subsequent review¬†consultations, ¬£15 per month for LDN¬†at pharmacy,¬†and ¬£10 rx administration fee. If it works, it’s more than worth it to have my life back.

Linda at the LDN Research Trust was a great help in advising where I could obtain LDN in my local area and giving me the clinic contact details. http://www.ldnresearchtrust.org/

At the moment I’m sticking to my gluten free diet and a huge variety of supplements and vitamins. Going to attempt to grow my own chillies and herbs tonight for the yummy gluten free recipies I’ve found. Lots of fresh fruit and vegetables and keeping off the gluten seem¬†to have helped a bit with the fatigue and¬†‘stomach problems’.¬†Invested in a bread maker and now have gluten free bread that looks, tastes, and behaves like bread!!
Starting Tai Chi on the 8th; hopefully that’ll help with the leg stiffness. I’ll keep you posted!

On a completely different note, I took the Strengths Finder 2.0 assessment today for work and the results were surprisingly accurate! Apparently, these are my top 5 strengths:

Ideation

People who are especially talented in the Ideation theme are fascinated by ideas. They are able to find connections between seemingly disparate phenomena.

Learner

People who are especially talented in the Learner theme have a great desire to learn and want to continuously improve. In particular, the process of learning, rather than the outcome, excites them.

Maximizer

People who are especially talented in the Maximizer theme focus on strengths as a way to stimulate personal and group excellence. They seek to transform something strong into something superb.

Command

People who are especially talented in the Command theme have presence. They can take control of a situation and make decisions.

Futuristic

People who are especially talented in the Futuristic theme are inspired by the future and what could be. They inspire others with their visions of the future.
You learn something new every day! ūüėČ


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