Last reply 1 year ago
Hi, Dipping my toe into the limbo pool

I am 55 yrs old, and have had a ‘interesting’ life… I am a practicing nurse, but also have a very creative streak…in my previous career I had a stained glass studio working on architectural stained glass. I now do wet felt paintings, make rag rugs, repair cane and rush chairs and have taught myself to play the fiddle.
I am married with two children, 30 and 27 yrs..lots of animals to look after, 2 dogs, cats, 2 riding horses, sheep, hens and occasionally pigs. We live on a smallholding in Scotland some distance away from the rush of city life.
I haven’t yet had a diagnosis, but the neuro/ms consultant thinks there is a strong possibility ( based on the symptoms and the patterns)that I have MS and has requested MRI scan, and probably then a lumbar puncture. The MS Consultant said that my Vit D was very low…i think he said 20 .. what ever that means?!
In the last 18mths I have had three bouts of ‘This Thing’ where i have quite severe weakness and fatigue..cant lift my arms, am staggering around and cant control my balance, fall over, am clumsy, numb and or tingling feet and hands, muscle cramps or spasms, headaches, visual alterations, problems speaking.. even having problems controlling my bladder and bowels..when i need to go I REALLY do, but also general constipation. When ‘This Thing’ hits I am really not myself I get very lethargic, it took about three weeks to recover from the first two bouts and then maybe not so long after the third..perhaps because I have learned a bit about self moderation.
The GP thought it was a muscle virus the first time round but has become more concerned after the repeats. In the midst of this it was discovered that I had nodules on my thyroid ; therefore the fatigue etc was attributed to this, and so I was put down the road of seeing the specialist in Endocrinology. That avanue has been exhausted now.

I dont want this to be all consuming, I want to be ME not MS..if that makes sense. I am at the stage that many will have gone through, studying and reading up – trying to understand, learning about lifestyle changes that may support me…and probably wont do me any harm anyway!!!!

I work shifts..mainly nights, I had to give up my permanent job and go to an agency (so I can arrange my work around how I am feeling) I do have some pretty late nights/early mornings when out playing the sleep patterns are chaotic!! I do smoke, and I have a horrifically erratic diet..I eat good quality fresh food when I eat… but don’t eat regularly, partly because I am in a constant state of jet lag and partly because food is not a major focus of my life. I dont really drink..usually I am the driver. I may have one or two drams a month.
I am a very positive person, always looking for the good things to focus on. My all time favourite book is Pollyanna.
So that’s me, xx
Emma T

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1 year ago

Hi @pikilily and welcome.

An “interesting life”! We’ll have to compare notes one day. 😉

Anyway, the limbo pool. Well, you’re in the right ball park to get out of the pool, with having a Neuro investigating what’s going on.

Frustratingly, the symptoms of MS can present in various other conditions, hence the MRI and possibility of the lumber puncture. So, you’ll need to be patient with the Neuro. They won’t give a diagnosis until they’re absolutely sure.

Scotland is an MS hotspot. It’s thought that the lack of exposure to sunshine leads to a vitamin D3 deficiency, which is thought to be one of the pieces of the MS jigsaw. Hence the majority of MSers are on an extreme supplement, with 5,000 iu , way above the RDA, being quite usual.

Canada is another MS hotspot for similar environmental reasons.

Your erratic lifestyle may have contributed to where you now find yourself, but that would only be anecdotal.

For the time being, bear with the Neuro and try your best to follow a healthy, balanced diet. And, do please try and avoid stress as this is a major agitator to MS.

1 year ago

Hi there @pikilily

Your interesting life sounds lovely (distressing health issues aside obviously) The MRI & lumber puncture should tell you what you need to know so it’s good that they’re happening. In the mean time TRY not to worry, it won’t help. Wishing you lots of luck! 😊

Sounds like you’ve plenty to keep you busy & distracted while you wait, I’m really intrigued, what is wet felt painting?

1 year ago


Wet an old (probably stone age) technique for getting loose wool fibres to bind together. I use this to create paintings..rather than give a long explanation here..have a look at my website. there is a gallery section. Hope you enjoy them.
Emma x

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