NEUROLOGIST APPOINTMENT

A visit to the neurologist is always an important event for patients with MSA.  In my case this happens once in eight months  For a couple of weeks before the consultation I start getting my questions together, gather information of research and  possible treatments and update my report to him.  What used to be little notes of what I wanted to discuss in the past, has now turned into a little report of  my degeneration since our last consultation and then we discuss what can be done to  help me. 

Firstly the good news; my speech and swallowing abilities remain unaffected and I haven't had any bladder infections so far.  Despite the current hot weather, it’s been months since I've last experienced a fainting episode caused by a drop in blood pressure.

My main area of degeneration has been in my balance, movement and co-ordination.  I tried every possible solution to keep walking, even when it was just a couple of steps with the walker and Johnny holding onto me.  I also tried taking the dopamine earlier to accommodate our early morning walking attempt, but it made no difference.  My feet freeze, I'm unable to control the placement of my left foot, and I have no balance whatsoever.  I can’t be left holding onto the walker for even a couple of seconds.  After a fall in December I realised the risks of trying to walk had become bigger than the benefits.  

I was shocked to observe the deterioration of the co-ordination and speed in my hands when the neurologist did his tests.  This explains why I've been struggling to keep up with things here on the internet.  It takes forever to write the simplest paragraph and being a perfectionist doesn't help. I try to correct every silly little mistake.

Over the last couple of months a new symptom had reared its ugly head; uncontrolled contractures of my left leg, called dystonia. My left shin and foot is permanently bruised from kicking into things and those who help me have to give the kicking leg a wide berth!  Dystonia can be caused by high doses op dopamine.  Dopamine had been the cause of a facial dyskinesia in the past and it disappeared after lowering the dose.  With the dystonia and the fact that the dopamine didn't help me with the walking in mind, he suggested that we slowly start reducing the dose further while keeping a close watch on how this affects me.

The leaning tower of Pisa

No matter how hard I try to straighten up when I sit, I always slump to the one side.  This tilted trunk posture (pisa syndrome) has been the cause of severe and chronic back ache.  Over time I have tried to remedy this by physiotherapy, several types of pain and anti-inflammatory medications, I've tested solid back wheelchairs that can tilt, and the orthotic technician designed and made me special wheelchair cushion.  Lying down has proved to be  the only way to be relieved of this pain, but too much lying down has led to further loss in muscle strength.  The neurologist prescribed anti-inflammatory medication, but also suggested I should consider facet block injections, a procedure where cortisone is injected directly into the problem areas.  I would like to hear if other patients have had success with this treatment for this specific problem.  Getting rid of this pain could improve my quality of life greatly.

He increased the dose of Lyrica for the ever burning pain caused by peripheral neuropathy in my legs and feet.

We also discussed whether intravenous immunoglobulin would be an effective and suitable treatment for MSA.  Although this treatment is used for Guilian-Barré syndrome, it is not a recognised and registered treatment for MSA.  There are some serious risks when taken in high concentrations, like asepticmeningitis and thromboembolic events.  Doctors in S.A. could face serious consequences if they prescribed it for unregistered conditions and things go wrong. The cost of R40 000 plus hospitalisation for a single treatment would not be covered by medical insurance.

I recently read this statement made by a patient on facebook; “Sometimes I do not know how to take all that is going on with my body”.

To me my body is the temporary vehicle for my soul.  Because this is so I am able to look at it objectively, knowing that I will one day leave this rusty, leaky old vessel for something infinitely better.

2 Corinthians 4:16-18

¹⁶ Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. ¹⁷ For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. ¹⁸ So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.