Tag Archives: living with MS

World MS Day… update and all that jazz…

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So, apparently today is World MS Day

Not sure why today was chosen but hey, any way to increase knowledge about the condition I happen to have been diagnosed with is something I suppose…

In my own personal terms, I’ve been on the old Tecfidera for over a month now and no real problems. Feeling positive about moving cross Europa (er, by plane) to Italia in a month or so. Also been busy on a musical project which will see the light of day very soon…so hold onto your headpiece…

 

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Self-management of fatigue

Self-management of fatigue

Interesting post from an MS specialist on coping with daily fatigue.

Impact of Boswellia on Inflammation

Impact of Boswellia on Inflammation

I start a clinical trial of Boswellia next week. It all sounds very promising!

Monday Mix

ImageJust a quick update on the old health situation…

I’m feeling very tired and somewhat frail today. Part of that is probably the old psychological effects of ‘Monday Sickness’, a day of the week which I still have an inbuilt nervousness of, despite the fact I work from home and more or less work when I want deadlines permitting that is…
Cheering me from my dazed-slumber was the news I received from the Charité this morning. Next week after my last pre-trial MRI scan I can begin the course of trial-treatment. All going well this should lesson any undue worries I might have about the condition and how likely any relapses may be.

In general though, I am feeling extremely healthy and positive. Just a case of the Monday aversion today. In one sense, it is all very interesting, both psychologically and philosophically. When our mood goes so far in effecting how we see the world – how much is objective (hint – not a lot) and how much is subjective (hint – most of it)?

MS Update – Early Morning Scan Business

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The ongoing investigation into discovering just what makes my personal MS thing tick took another step forward this morning.

At the (not so) bright and early time of 7.00 I had another MRI scan in the austere quarters of the Kaiserin-Friedrich Haus, just next to the Charité . Rather like getting a brain scan done in a museum or an art gallery (apparently there is a casino in there too!), it had a vaguely relaxing affect on me – or perhaps that was just the lack of sleep…

Anyway as ever, the MRI itself was the usual industrial/ambient crossover; a buzz of beeps, whirs and machine-made glottal stops, strangely inspiring. Obviously, some artists agree, including this group who created this piece back in 2010.

After the show was over, the NeuroCure assistant showed me the picture of my dear old brain. She pointed out two new active lesions, which qualify me for the Boswellia  trial/treatment.

Obviously this is something of a mixed bag – but it is the nature of relapsing/remitting MS that the myelin lesions clear and then are not active, and then new ones form. Anyway, the main thing is that the immediate future of my personal treatment is clear and is in the best possible hands. Staying positive/learning more!

BBC News – MS damage repair treatment looked at by Edinburgh researchers

Interesting report on a possible treatment to promote regeneration of myelin.

BBC News – MS damage repair treatment looked at by Edinburgh researchers.

Health Update

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Just a quick update on my health and MS diagnosis…

Last Wednesday I spent the morning back at the Charité, being administered to further tests and another MRI scan on my brain in order to help further research into the condition. Along with the scan, I was assigned various mental and physical check ups – including a memory test (in German) – to assess my condition.

The results of the scan showed one (small) active lesion so it appears one or more have healed or cleared up. Perhaps, the summer and the sunshine has helped me out more that I realised! In any case, in order to be eligible for the Boswellia clinical trial I would need to exhibit two active lesions. I have agreed to undertake more MRI observation over the next few weeks.

It could well be that the outcome in my particular case will be to keep a monitor without any specific or active treatment, and to stay fit, healthy and positive, all of which I am happy to say I am!

Not exactly news, but more sun and Vitamin D is good for us!

Not exactly news, but more sun and Vitamin D is good for us!

Menzies Research Institute Tasmania investigate the effects that sun exposure and vitamin D may have on fatigue and the neuropsychological symptoms of MS…

Salt overload a factor in MS symptoms?

Salt overload a factor in MS symptoms?

Article in the Evening Standard looking at the research carried out by University College London Hospitals linking high sodium levels and nerve cell damage…

Diagnosis Made; Onwards and Upwards…

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So, I got out of the Krankenhaus here in Berlin last Friday.

I was in the Charité for 3 nights; three very long days and very boring nights. Pretty tiring, as all hospital stays can be. Tiring and washed-out dull but not unduly distressing. There was quite a bit of staring out the window (see above).  The food was pretty reasonable as hospitals go – although my last meal was a small fruit pudding preceded by a large fruit pudding. The vege menu had clearly been exhausted…

I won’t bore you with all the details of all the tests I went under. I’ll just say that they were extremely thorough. I have had MRI scans before of course, and there were another two carried out here. There was also the not-as-bad-as-I-feared lumbar puncture (or in American, spinal tap) – 30 seconds of sharp pain and then no bruising, so fair enough.  It was also a good test of my (very poor) German…

Anyway, on Tuesday we went back to the hospital and saw the neurology team assigned to me. They confirmed what we all suspected they would, which was a diagnosis of remitting MS. I was prepared for this, as my last scan in England left the neurologist in no doubt.

What remains now is to figure out with my neurologist here the best course of treatment. I’m seeing the neuro on Montag for an appointment, so I’ll write again after that. My only thoughts on this have been wanting oral treatment such as a daily pill, as opposed to injections. keine Nadeln! keine Nadeln!