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Visit to the MS Nurse 'today'

I want to write this all down while I remember.

Things we discussed today (well, yesterday afternoon now):

  • My flexible sigmoidoscopy and colonoscopy, my blood test to test for coeliac and all of my bowel issues. Apparently (I did already know this but had begin to think that I must have been mistaken) MS can cause bowel incontinence despite my gastroenterologist asserting that it could not because bowel peristalsis is controlled by the autonomic nervous system and not the central nervous system (the latter is affected by MS). She suggested I print something out from the MS Society web site and take it with me when I next see my gastro-doc. This smacks of doctors, even MS specialist neurologists, that insist that, "you do not get pain with MS!" I'd like to see them try a day in our shoes! A useful page of downloadable PDF information about MS and living with it.

  • My increasing autistic-or-aspergers-a-like symptoms (e.g. inability to deal with change, need for routines and everything to be in its place) and alzheimer's-a-like symptoms (e.g. word loss, inability to see things, memory loss) are both likely to be due to the MS as well because most of my MS symptoms (apart from bladder 'issues') are cognitive or otherwise head-or-brain-based as opposed to spinal-cord-based.

  • We talked about my imminent loss of counseling/counselor and is going to look at the available options for psychologist treatment and/or CBT and/or NLP and get back to me. She remembered having a name/contact she could send me but did not have it to hand and so will email me. I have already contacted my local MS Society branch and they do not provide any counseling services for members. We also agreed that PwMS have a need for ongoing, whole-life counseling and/or mental treatment of some kind because MS does not just get better or go away and instead keeps throwing new symptoms and losses of abilities at us. We need a safe place to vent and rant as well as a place to learn coping techniques and strategies.

  • The cessation of my Amitriptyline has not improved the double vision that it might have been causing and instead has removed the two main benefits that it was providing, namely 1) the calming of my bladder enabling me to sleep through the night without being woken every couple of hours (like a baby! :( ) by a not-always-fruitful urge to urinate and also 2) the reduction of pain, for example the waking-up-with-a-migraine-that-is-too-far-gone-to-medicate scenario that was the main reason I was first prescribed Amitriptyline.

  • The double vision and the temporary prism that has been added to my glasses at my eye clinic appointment on Friday.

  • The bladder issues left by the removal of Amitriptyline from my medications arsenal and her referral back to my continence advisor. Te possibility that I may need to start Intermittent Self Catheterisation before I try to sleep.

I am sure there were others that I am forgetting at this moment - I will update this post as needed.



( 3 comments — Leave a comment )
Apr. 21st, 2009 04:07 pm (UTC)
Why to health professionals never listen to us? We live with this awful illness and yet they tell us whats real symptoms and whats not! Im glad you have been agreed with by your MS nurse or neuro cant remember which lol.

We have a lot of similar symptoms it always makes me keep going when I read that you keep fighting through
Apr. 21st, 2009 05:02 pm (UTC)
My normal MS Neuro and this person (my MS nurse) are both great (and also both female).

I don't think of myself fighting that hard - I feel like a total whiny wimp! - and so I am always humbled to hear that some of you find me inspiring! ;-p

Apr. 21st, 2009 11:35 pm (UTC)
This is an excellent post.
My mother had M.S., I told you sometime over a year ago, but figure I should say again.
I know for certain that M.S. Causes bladder and bowel incontinence. I'm not sure if you are getting muscle spams as frequently or intensely as my Mom did , but that was a contributing factor.
As my Mom's M.S. Progressed her symptoms became more cognitive and she was quite disturbed by the changes due to knowing she wasn't like that in the past. Austistic/Asperger's like symptoms are quite a good way to put the neurological signal disruption and oddness of new behaviors when changes happen or other triggering events take place.
Amitriptyline is definitely a medication of relief, and help with sleeping, not to mention it's effects on moods regarding the neurological changes going on, also anxiety reduction helps.. overall.. for many people.

My well wishes are always with you, I do hope that the doctors listen (they do, some of them but they are few and far between) and I also hope you can find counseling it's so helpful to just talk about everything.

Hang in there.
( 3 comments — Leave a comment )


Nat S Ford
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