Progression of my MS

 

Leonora Carrington
http://en.wikipedia.org/wiki/Leonora_Carrington

A slightly better day at last today; but not so good, not when I have been experiencing so much pain.

The latest nasty thing is the amount of excruciatingly painful tension in my hands, arms, and shoulders.

My arms often tightly folded on my chest, mostly during the night, recently when I sneeze, cough, yawn or laugh my arms are stuck like super glue.

Also an incredible tension and pressure around my torso, as well as it causing my jaws to tightly clamped closed, difficult to unclench again.

Breathing then becomes laboured, luckily up to now; I eventually begin to relax and can breath freely again.

Up to now this had been happening mainly when I wake up, in the morning as well as during the night and whenever I laugh, cough, sneeze or yawn.

Recently I noticed with some worry that it’s not restricted to when I have been sleeping or when yawning etc.

 It can and does now occur at anytime, often when writing which is unpleasant and frustrating and causes lots of problems.

That and the slow bowel movements are making my life quite uncomfortable right now.

 

My legs are constantly feeling as if they are burning up or being electrocuted or having pins stuck into them, they are always icy cold and painfully stiff.

Its scary feeling the progression of my MS and knowing that by how it feels that the progression won’t stop anymore, not now.

The paralysis has affected my whole body and stopped any movement apart from involuntary ones, such as slipping down the bed.

My midriff will concertina, due to no functioning muscles, not after spending so long in bed from 2008 to 2010.

Because my muscles are no longer working, so my spinal deformity has got so much more severe, if I could walk I would be bent, twisted.

This together with my MS progression makes my life awfully difficult, sometimes it’s impossible for Richie to position me so I will maintain my posture for anytime at times it means constant adjustments by Richie. 

At night I can do nothing, sweating as I can’t move to make myself more comfortable, this increases my spasms, sweating causes thrush infections.

When I got my MS diagnosis in July, 2006 I heard it was Primary Progressive MS, I was sent for second opinion

The neurologist thought it could be Secondary MS, after more MRI’s then 9 months later both neurologists agreed it could be Primary Progressive MS.

Since then my MS progression has carried on, it has never stopped, and I have not had any time off.

I think it is now obvious that I have PP MS, I hoped for more time with my darling Richie, but the way things are going, it maybe not possible.

It may well be nearly last orders, but I intend to enjoy as long as I can, which I will do, I am conscious of being very much in the here and now with my darling Richie, which is good.