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Saturday, February 16, 2013

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.

19 comments:

  1. Dear Sonja, I love you. You have such a proud soul.

    With all the hardships that I've suffered in my life, I am thankful that I need not suffer your's. You are a very brave woman. I salute you.

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    1. Dear Lidia, I have no doubt that you would put up a brave fight if necessary. As a matter of fact, you already have! Love, Sonja

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  2. Hola Sonja,soy tu amigo de Chile,yo uso GAPENTINA,funciona para Neuropatia periférica,pero solo cuando se produce el problema,luego dejo de tomarla.de esa forma no se produce acostumbramiento del organismo.

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    1. Hola Makito, thank you for the comment and the tip. I'll google Gapentina and see if it's available here. Take care. Abrazos, Sonja

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    2. Sirve para MSA!CUIDATE AMIGA SONJA!
      http://www.europapress.es/salud/investigacion/noticia-edulcorante-artificial-demuestra-potencial-tratar-parkinson-20130617185929.html

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  3. Some of my friends find it difficult to post comments here (I know it's tricky but love to hear from you, so don't give up!) and after several failed attempts my dear friend Elize van der Westhuyzen asked me to post to following for her:

    Sonja dankie dat jy jou storie met ons deel. Jy staan uit in gedagtes as ‘n sagte dog sterk vrou met ‘n wil!! Jou ingeligtheid oor jou siekte toestand, glo ek, dra oneindig baie by tot die bewusmaking oor MSA. Ek glo ook dat jou mede MSA vriende daarby baat vind. Omdat ek glo ons as mens is waar ons moet wees, wanneer ons daar is, lekker of sleg, (moeilike ene ne?!?) en ons ook nie beheer het oor waarheen ons kaart ons neem nie, dit nodig is om in die oomblik te probeer wees! (Nog n moeilikke een!!) "Not to regret a moment!" My opsomming is dat jy ten volle in jou "moments" is !! Jou omgee en moed inspireer my. Dankie, dankie dankie. My wens vir jou is dat liefde, vrede en vreugde jou daagliks groet. Dat MSA jou sag en met respek sal hanteer! Jy is spesiaal. In liefde lig en vrede Exx

    Thank you for your wise and encouraging words Elize. Some them made me think but (I think) I know what you mean, and agree! Love you lots!

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    1. That should read; "Some of them made me think..." LOL! There I go again...correcting my mistakes! ;)

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    2. Dear Sonja,
      Even though we are on this journey together we are at different parts of path. You are a brave and wise lady! I wish I were as optimistic as you after my neurologist's appointment, but I usually have to cancel everything as it is too over whelming. Even though it takes for ever to type keep up the great blogging!
      Hugs, Brenda

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    3. It's great to hear from you Brenda! I'm following your journey and I'm impressed with what you and your team are doing! Hugs, S
      http://msaonedayatatime.blogspot.ca/2013/02/superwalk-2012.html

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    4. For those who wonder about the language sometimes used in comments by friends, it's my mother tongue, Afrikaans. Google translations results are unfortunately often weird and funny!

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  4. I agree with Elize's comments on you being so objective/wise whilst adapting to this new route your life has taken..
    Thanks for sharing dear friend..


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    1. Thank you for your comment Anchen. Your support warms my heart. Hugs, S

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  5. I understand how frustrating the balance issues must be. You certainly don't want to fall and injure yourself physically ... my goodness, you have enough to deal with. I celebrate that your speech and swallowing are not now an issue. Hurray!

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  6. I agree, HURRAY!!! Patients with speech problems must feel frustratingly isolated.

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  7. PS: Sharechare I absolutely LOVE MY KINDLE!!! I'm shopping deprived so it's great to go shopping at Amazon, download samples of books and free books. Love your blog and your enthusiasm with which you share your knowledge about techno gizmos!

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  8. Hola Sonja,puedo escribir en Español o prefieres ingles.puedes traducir?

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  9. Hi Makito, your welcome to write in Spanish, I'll use google to translate. xx

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  10. Hi dear Sonja... somehow I missed this blog... just read it now. Thanks so much for the intelligent, brave, matter-of-fact information. In providing us all with the facts, it makes communication and the little help we maybe able to give (sometimes only online because of distance) so much easier. You open up a confidence line of communication which is so important in every "different" situation. We SO love you for that and feel emotionally richer with every blog you post. Love you so much and sending hugs from afar. Sokkies says purrrr!

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