When I last consulted the neurologist in February, he referred me to a neurosurgeon to investigate the possibility of facet block injections as a solution for the pain caused by Pisa syndrome. After x-rays showed no damage to the facet joints, the neurosurgeon in turn referred me to the pain clinic.
The pain specialist prescribed several medications; an anti-inflammatory, a muscle relaxant (clonazepam), an antidepressant with muscoloskeleton pain relieving qualities, and a pain killer. It was with the pain killers that I experienced the worst side-effects. After two weeks of nausea and vomiting he changed the pain capsules to a weekly pain patch. This caused even worse problems, made me extremely sleepy, very tired, and constipated. The whole idea of pain control was to improve my quality of life by enabling me to sit for longer periods. The patch failed to do this. I was spending my days in bed asleep, too tired to do anything. By the end of the first week I realised that anything that killed the pain effectively would necessarily suppress the central nervous system, causing side effects like sleepiness. By that time the neurologist had received the report of the change in medication, and phoned me to let me know that the pain patch was not suitable for Multiple System Atrophy (MSA) patients. I yanked it off, and did what I've always done when the pain gets unbearable; take two paracetamol and lie down in a mentally alert state. That way I can at least chat with friends, read, watch TV, and listen to music. I have continued with the other 3 medications, which give me some degree of relief from the chronic pain.
|The recliner, nick named 'Lazy-Girl', has become an indispensable part of my life. That's my 'Sissi' Karin on the right.|
Although the quest to find pain relief could not be considered a huge success at this stage, I might in the future need, and will have to live with, stronger medication . The experience confirmed that doctors out there don’t know how to treat patients with MSA, and I made a mental note to insist that all medication prescribed by other doctors in future would have to be approved by the neurologist prior to me taking it.
The following deterioration in my condition has been noted in my report to the neurologist;
· I have slowed down even more.
· Transfers to and from the wheelchair have become more difficult.
· My balance is even worse and has been the cause of me falling from a sitting position.
· The fine motor co-ordination in my hands, especially the left side, has deteriorated, causing the following problems; handling of cutlery and therefore eating has become difficult (and messy), typing is slow with lots of mistakes, writing and signing my name is very difficult, I struggle to wash and dry the right side of my body with my left hand, I can no longer floss my teeth and had to buy an air flosser, putting on jewellery is difficult to impossible, doing up buttons is impossible, handling a newspaper has become extremely trying, slippers keep falling off my left foot, and I had to acquire a brace to stabilise my left ankle.
· The dystonia in my left leg has become worse.
· Tremors have become worse, especially when I'm stressed.
· The Pisa syndrome has become worse with a more pronounced lateral trunk flexion.
· The peripheral neuropathy and associated pain has worsened.
My eyes are very dry, and vision, especially in low light, has deteriorated.
Some areas however remain unaffected or there had been little change;
· My speech shows no signs of being affected.
· Swallowing is only a problem with foods that have a dry texture because of my extremely dry mouth.
· My bladder is controlled with the help of medication, and I have had no infections since the diagnosis.
· Constipation is controlled with the use of a bulking agent, Intestiflora, and Activia yoghurt.
The following symptom has improved because of adjustments in medication;
· I have experienced no drops in blood pressure that used to cause me to faint.
On the day of the appointment it was raining, which made getting me and the wheelchair in and out of the car, in a relatively dry state, a challenge achieved with the carer’s help and a huge golf umbrella.
The doctor’s tests confirmed the deterioration of the fine motor skills in my hands. He suggested some tweaking of my medication, and was open to my suggestion to try Amantadine, a flu medication suggested to be of some possible help by Prof Gregor Wenning in his talk with a group of patients earlier this year in Sydney.
As my friend Ed would say; “physical advantage: MSA, mental and spiritual advantage: Sonja”
Although I have to accept the fact that it might be unlikely that a cure will be found in my life time, I am not without hope. I am also very thankful that my speech and swallowing abilities have remained unaffected so far.
Jeremiah 29:11. For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.