Autonomic Dysfunction in PwMS

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jimmylegs
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Autonomic Dysfunction in PwMS

Post by jimmylegs »

Understanding and managing autonomic dysfunction in persons with multiple sclerosis
https://www.tandfonline.com/doi/abs/10. ... 21.1994856

Expert opinion
AD in pwMS can manifest with a myriad of symptoms including cardiovascular, urogenital, and sweating disorders. These symptoms can significantly impact the quality of life of pwMS with poor tolerance of upright position, difficulties in sexual function, and low endurance of physical activity especially in warm environments. Health professionals involved in care of pwMS should possess basic knowledge of the function of the autonomic nervous system and be informed of the way disorders of the autonomic function may manifest in pwMS in order to provide the proper care.

unrecorded by any health pro in any systematic fashion of which i'm aware (never had any exertion-related testing for example), gradually diminishing endurance of physical activity has been my issue for over a decade (2007-2018) of zero relapses... jus sayin!
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jimmylegs
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Re: Autonomic Dysfunction in PwMS

Post by jimmylegs »

I'm reminded of this article posted earlier this year:

Smouldering multiple sclerosis: the ‘real MS’
https://journals.sagepub.com/doi/full/1 ... 4211066751
" ...progressive accumulation of disability in MS can occur independently of relapse activity from early in the disease course. This scenario is underpinned by a more diffuse smouldering pathological process that may affect the entire CNS. Many putative pathological drivers of smouldering MS can be potentially modified by specific therapeutic strategies, an approach that may have major implications for the management of MS patients. We hypothesise that therapeutically targeting a state of ‘no evident inflammatory disease activity’ (NEIDA) cannot sufficiently prevent disability accumulation in MS, meaning that treatment should also focus on other brain and spinal cord pathological processes contributing to the slow loss of neurological function. This should also be complemented with a holistic approach to the management of other systemic disease processes that have been shown to worsen MS outcomes."

@zyklon NEDA made me think of you - any thoughts?
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Zyklon
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Re: Autonomic Dysfunction in PwMS

Post by Zyklon »

Late reply :)
We hypothesise that therapeutically targeting a state of ‘no evident inflammatory disease activity’ (NEIDA) cannot sufficiently prevent disability accumulation in MS
I am 39 now. I had only one major relapse which was 5 years ago. Sometimes I experience mild/moderate ataxia and some very mild pins/tingles. My family and I do not notice any disability increase.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
jimmylegs
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Re: Autonomic Dysfunction in PwMS

Post by jimmylegs »

i really hope that your early actions were prompt and decisive enough to turn things right around in your case, z!

i will say though, that in early years for me it did take a fair amount of physical exertion (eg 5+ hours carrying gear across uneven terrain) to demonstrate that functionally, the 'end of my rope' was indeed there.

it took close to a decade for me to really notice that i needed breaks more often if my core temp was up.

over the last seven years, it's been a pretty steep decline - aligned with obviously declining hormone levels.

luckily, adding some hormones to the nutrition and lifestyle mix has been helping with quality of life!
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Zyklon
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Re: Autonomic Dysfunction in PwMS

Post by Zyklon »

Yea I guess so. Some very strong reactions by myself, a disease-modifying drug, exercise, and maybe some luck.

J, maybe it is not only MS and natural aging?
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
jimmylegs
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Re: Autonomic Dysfunction in PwMS

Post by jimmylegs »

hopefully all the contributing factors will keep working in your favour :)

for me, i'm not sure what else it could be, but i do try to be open to reasonable possibilities.

for example - i had never thought i would need thyroid meds, but i could see the hypo tendency the first time the specialist ordered a that panel.

i'll still do the best i can not to need that prescription, but right now, it's a daily thing i never expected!
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