Can your life ever be normal again?

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.
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jimmylegs
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Re: Can your life ever be normal again?

Post by jimmylegs » Tue Jul 23, 2019 7:37 pm

i don't know mine, but i was thinking well rounded profiles detailing not just edss but also individuals' various efforts made healthwise to date, would also help provide a clearer picture. then i wondered whether science had already asked that question:

Lifestyle-based modifiable risk factors in multiple sclerosis: review of experimental and clinical findings (2019)
https://www.ncbi.nlm.nih.gov/pubmed/31116081
"Multiple sclerosis (MS) is a lifelong inflammatory and neurodegenerative disease influenced by multiple lifestyle-based factors. We provide a narrative review of the effects of modifiable risk factors that are identified as being associated with risk to develop MS and/or influencing the future clinical disease outcomes. The emerging data regarding the beneficial effects of diet modifications and exercise are further reviewed. In contrast, obesity and comorbid cardiovascular diseases are associated with increased MS susceptibility and worse disease progression. In addition, the potential influence of smoking, coffee and alcohol consumption on MS onset and disability development are discussed. Successful management of the modifiable risk factors may lead to better long-term outcomes and improve patients’ quality of life. MS specialists should participate in educating and facilitating lifestyle-based modifications as part of their neurological consults."

Dietary and lifestyle factors in multiple sclerosis progression: results from a 5-year longitudinal MRI study (2019)
https://www.ncbi.nlm.nih.gov/pubmed/30758665
"The study enrolled 175 MS or clinically isolated syndrome (CIS) patients and 42 age- and sex-matched healthy controls (HCs) who were longitudinally followed for 5.5 years. The 20-year CVD risk was calculated by Healthy Heart Score (HHS) prediction model which includes age, smoking, body mass index, dietary intake, exercise, and alcohol consumption.
...
baseline [Healthy Heart Score] values of the MS group were associated with baseline [gray matter volume] ... and longitudinal [lateral ventricular volume] change...
The diet component of the [Healthy Heart Score] was associated with the 5-year [T2-lesion volume] accrual ... in MS.

In the [Healthy Control] group, the [Healthy Heart Score] was associated with [lateral ventricular volume] ..., [gray matter volume] ..., [whole brain volume] ..., [T2-lesion volume]..., [white matter volume]... 5-year change in [lateral ventricular volume] ... and in [whole brain volume]...

Lifestyle risk factors contribute to accelerated central brain atrophy in MS patients, whereas unhealthier diet is associated with MS lesion accrual. Despite the lower overall effect when compared to HCs, lifestyle-based modifications may still provide a beneficial effect on reducing brain atrophy in MS patients."
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

robbie
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Re: Can your life ever be normal again?

Post by robbie » Thu Jul 25, 2019 8:33 am

Dam Jimmy you always nail me with your article's lol I'm guilty of all the highlighted material. I check all the boxes for what you shouldn't do ! There was a time believe it or not I did try and do things right, better diet, didn't smoke, less beer. Things change a lot in 28 yrs. Are you still working, walking ? I admire your devotion to staying healthy :)
Had ms for 27 yrs, taken a different approach to treatment I call it the FUMS treatment
DISCLAIMER anything posted by me is purely made from anger and disdain for ms,
Regime
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jimmylegs
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Re: Can your life ever be normal again?

Post by jimmylegs » Thu Jul 25, 2019 10:50 am

heya, i'm on academic stuff atm but can't afford to be out of work much longer. walking yes but a bit worse off overall after the adventures of 2018!!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

robbie
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Re: Can your life ever be normal again?

Post by robbie » Thu Jul 25, 2019 11:06 am

The EDSS score can change probably a lot both up and down in early stages. Once it sets in full time you tend to stay there more. It helps to visualize people's challenges in an annamoose world, like now I know EB can still walk and work thx EB . Changes the way you think about things.
Had ms for 27 yrs, taken a different approach to treatment I call it the FUMS treatment
DISCLAIMER anything posted by me is purely made from anger and disdain for ms,
Regime
2 cigars a day
4 beers
6 or more codein
2 valium
Pot as needed

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jimmylegs
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Re: Can your life ever be normal again?

Post by jimmylegs » Thu Jul 25, 2019 11:51 am

ups and downs for sure. i was a train wreck at dx and figured ok it took me 15 years to get into this mess, could take another 15 years to dig back out. i'm 13 years into that chunk now. after the ups and downs of the learning curve, i got maybe overconfident. overdid work, slacked off on self care and WHAM flu, ferocious headache, double vision and brain damage on mri. i'd been slacking on testing for the sake of work. got busy and found that nutrient numbers were in the toilet. i've been back on track since then, with a vengeance. for the eyes, it took 6 weeks of independent physio to be able to drive again. the ms lit on that subject was slim to none. 'wait and see' in effect. i ended up digging the solution out of the traumatic brain injury rehab lit. next, my friend was dxd with aggressive cancer. her nutrient numbers were crap too. so she and i fought our way of a terrible nutrition pit together. we do fitness together now as well. when i first went i would be a train wreck trying to walk after the session. way more functional now after just 10 weekly sessions. pretty encouraging. i was interested to read that study about the value even of standing frame rehab for applicable ms cases. personally, i do like to basically know that i did everything i could before assigning any limitation to the irreversible bin.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

robbie
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Posts: 1285
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Location: Northern Ontario, Canada

Re: Can your life ever be normal again?

Post by robbie » Tue Aug 13, 2019 9:08 am

zen2010 wrote:
Tue Jul 23, 2019 6:28 am
Hello,

Hope my comment won't hurt anybody.

I kind of agree with Robbie.

Zyklon,
If i remember well, your EDSS is 1 or even less.
If you were at 6, I'm pretty sure your speech would be different...


Cheers
I always wondered about this post in reply to something I said, an apology and hope that no one's feelings will get hurt for agreeing with robbie. Seems weird ?
Had ms for 27 yrs, taken a different approach to treatment I call it the FUMS treatment
DISCLAIMER anything posted by me is purely made from anger and disdain for ms,
Regime
2 cigars a day
4 beers
6 or more codein
2 valium
Pot as needed

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zen2010
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Re: Can your life ever be normal again?

Post by zen2010 » Tue Aug 13, 2019 9:30 am

Hi,

I was just giving my opinion about people with EDSS <1, telling that MS can lead to even a better life.
I think these people don't really know what is it to have "strong MS".

It reminded me a cute lady (she is a famous model) saying on a TV show, that people with overweight should not consider obesity as a problem.


That's was just my opinion, and I hoped it would not "hurt" these people's feelings.
That's all

Cheers
Last edited by zen2010 on Tue Aug 13, 2019 11:52 am, edited 1 time in total.

robbie
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Re: Can your life ever be normal again?

Post by robbie » Tue Aug 13, 2019 10:48 am

From 0-4 your totally ambulatory, still working, driving, probably still having sex, ect. From 5 on you start to really understand what ms can do. It's more than just a pain in the ass.
Had ms for 27 yrs, taken a different approach to treatment I call it the FUMS treatment
DISCLAIMER anything posted by me is purely made from anger and disdain for ms,
Regime
2 cigars a day
4 beers
6 or more codein
2 valium
Pot as needed

THX1138
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Re: Can your life ever be normal again?

Post by THX1138 » Fri Aug 16, 2019 5:58 pm

JL:
i do like to basically know that i did everything i could before assigning any limitation to the irreversible bin.
Ya, me too. If there is a possibility that a problem comes from something I can change, then that is what I focus on and I tend to not accept a diagnosis that states that, "This is what you have and you can't do much of anything about it."

robbie
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Re: Can your life ever be normal again?

Post by robbie » Sat Aug 17, 2019 6:04 pm

Hi THX what is your EDSS ?
Had ms for 27 yrs, taken a different approach to treatment I call it the FUMS treatment
DISCLAIMER anything posted by me is purely made from anger and disdain for ms,
Regime
2 cigars a day
4 beers
6 or more codein
2 valium
Pot as needed

THX1138
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Re: Can your life ever be normal again?

Post by THX1138 » Sun Aug 18, 2019 9:09 am

I don't know, but I would think it is not good.

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NHE
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Re: Can your life ever be normal again?

Post by NHE » Sun Aug 18, 2019 11:06 am

THX1138 wrote:
Sun Aug 18, 2019 9:09 am
I don't know, but I would think it is not good.
Well, you're posting on an internet forum, so you're not a 10 (assuming you're not an AI).

From https://www.verywellhealth.com/expanded ... is-2440692

0.0: All FS are normal

1.0: Minimal signs of MS in one FS; no disability

1.5: Minimal signs in more than one FS; no disability

2.0: Minimal disability in one FS

2.5: Mild disability in one FS or minimal disability in two FS

3.0: Moderate disability in one FS or mild disability in three or four FS; walking is not impaired

3.5: Moderate disability in one FS and mild disability in one or two FS, moderate disability in two FS, or mild disability in five FS; walking is not impaired

4.0: Relatively severe disability, but walking not impaired; person is up and about most of the day (12 hours) and able to walk 500 meters without aid or rest

4.5: Relatively severe disability; able to walk 300 meters without aid and work a full day, but may have limitations of full activity or require minimal assistance

5.0: Ability to walk 200 meters without aid or rest, but disability impairs full daily activities, such as working all day without special provisions

5.5: Disability precludes full daily activities; ability to walk 100 meters without aid or rest

6.0: Need for intermittent or unilateral constant assistance (cane, crutch, or brace) to walk 100 meters with or without resting

6.5: Need for constant bilateral support to walk 20 meters without resting

7.0: Unable to walk more than 5 meters even with aid; restricted to a wheelchair but can operate the chair, transfer to and from the chair, and be active in the chair for 12 hours a day

7.5: Unable to take more than a few steps; restricted to wheelchair and may need aid to transfer. Can wheel self, but may need a motorized chair for a full day's activities

8.0: Restricted to bed, chair, or wheelchair, but may be out of bed much of day. Retains self-care functions and has effective use of arms

8.5: Restricted to bed much of day with some effective use of arms; able to perform some self-care functions

9.0: Confined to bed, but able to communicate and eat

9.5: Confined to bed but helpless; unable to communicate effectively or eat and swallow

10.0: Patient has died from MS

robbie
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Re: Can your life ever be normal again?

Post by robbie » Mon Aug 19, 2019 2:23 pm

What do you think THX ,Are you not as good as you thought?
Had ms for 27 yrs, taken a different approach to treatment I call it the FUMS treatment
DISCLAIMER anything posted by me is purely made from anger and disdain for ms,
Regime
2 cigars a day
4 beers
6 or more codein
2 valium
Pot as needed

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