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Author Topic: MS Support thread.  (Read 3773 times)

NiDara

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MS Support thread.
« on: August 16, 2015, 09:06:00 pm »
I've been looking for some place to connect with people who either have MS or have loved ones with it, so I figured I'd would start here. My neurologist told me he thinks I've actually had it for about 4 or 5 years. I'm only a few weeks into actually dealing with it (finding the right treatment mainly and wondering how it'll affect my life in the future). Can anyone offer any advice on what to generally expect? (I also realize it affects every person differently, but I'm sure there's some commonalities to be found.)

RandallS

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Re: MS Support thread.
« Reply #1 on: August 16, 2015, 10:09:24 pm »
Quote from: Amber Seal;178900
I've been looking for some place to connect with people who either have MS or have loved ones with it, so I figured I'd would start here. My neurologist told me he thinks I've actually had it for about 4 or 5 years. I'm only a few weeks into actually dealing with it (finding the right treatment mainly and wondering how it'll affect my life in the future). Can anyone offer any advice on what to generally expect? (I also realize it affects every person differently, but I'm sure there's some commonalities to be found.)

Lyricfox (my wife) is in the same boat only her neurologist thinks she may have had it for 15 years or so, but no one ever thought to check for it as all her other problems could easily explain the vast majority of her symptoms (including all the obvious "this might be MS" ones).
Randall
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NiDara

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Re: MS Support thread.
« Reply #2 on: August 16, 2015, 11:21:18 pm »
Quote from: RandallS;178903
Lyricfox (my wife) is in the same boat only her neurologist thinks she may have had it for 15 years or so, but no one ever thought to check for it as all her other problems could easily explain the vast majority of her symptoms (including all the obvious "this might be MS" ones).

 
Well, the only reason I found out I had MS at all was because a routine eye exam evolved into finding out I had optic neuritis, along with a couple MRIs and other symptoms I now know are related to MS. The neurologist mentioned similar cases with patients having had it much longer than I have. In that regard, I'm lucky to have found out that much sooner.

RandallS

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Re: MS Support thread.
« Reply #3 on: August 17, 2015, 08:05:10 am »
Quote from: Amber Seal;178907
Well, the only reason I found out I had MS at all was because a routine eye exam evolved into finding out I had optic neuritis, along with a couple MRIs and other symptoms I now know are related to MS. The neurologist mentioned similar cases with patients having had it much longer than I have. In that regard, I'm lucky to have found out that much sooner.

LyricFox's MS was masked by radiation damage to her spinal cord in her neck (from her oral cancer in 2008), degenerative vertebrate issues in her lower back pinching nerves and causing lots of other issues, etc. etc. She was only diagnosed because a neurosurgeon she about back surgery options saw was surprised she had never been referred to a neurologist.
Randall
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NiDara

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Re: MS Support thread.
« Reply #4 on: August 18, 2015, 05:29:14 pm »
Quote from: RandallS;178918
LyricFox's MS was masked by radiation damage to her spinal cord in her neck (from her oral cancer in 2008), degenerative vertebrate issues in her lower back pinching nerves and causing lots of other issues, etc. etc. She was only diagnosed because a neurosurgeon she about back surgery options saw was surprised she had never been referred to a neurologist.

 
Besides medical treatment, how does she deal with MS? How does it factor into the spiritual side of her life, if it's not too personal?

RandallS

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Re: MS Support thread.
« Reply #5 on: August 18, 2015, 05:58:32 pm »
Quote from: Amber Seal;179003
Besides medical treatment, how does she deal with MS? How does it factor into the spiritual side of her life, if it's not too personal?

It's hard to say as the diagnosis is very new and it's simply on top of all the problems she's had for years. The main effect on her life the last few years has been she simply has no extra energy. And her back problems make it hard for her to move around much some days. The effect on her spirituality of all her medical issues is just has less time and much less energy for it.
Randall
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Jenett

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Re: MS Support thread.
« Reply #6 on: August 18, 2015, 06:41:35 pm »
Quote from: Amber Seal;178900
Can anyone offer any advice on what to generally expect? (I also realize it affects every person differently, but I'm sure there's some commonalities to be found.)


I’ve got other chronic medical foo, not MS, but some stuff I’ve found helpful (and a few notes from friends with MS)

First, the two people where I know the most about how they’re doing day to day, they have pretty good lives. They do have to be careful about some self-care (like anyone with chronic illness stuff, really), but meds help, and over time they’ve learned how to balance different things they want to do, what self-care stuff helps (and is worth the effort) and what isn’t, and found doctors and other health providers they trust.

One of them has found that she really needs to do particular kinds of regular exercise (gym-based weight training several times a week) to keep symptoms more minimal and keep her balance where she wants. The other does less of that - people’s bodies are different.

Both of them are careful about tracking changes, without panicking too much that each new change is something horrible. (There are great phone apps these days for symptom tracking.) Both of them have had some frustrations about dealing with meds (issues with insurance, their local pharmacy, etc.) Those things are really pretty common for many of the people I know with chronic stuff, as well as the “Not sure what’s going to be true down the road”

In more general chronic illness stuff, the things I’ve found that are helpful are:

1) Even if you only just got a diagnosis, if the symptoms have been around for a while, remember that you probably already have some coping techniques for the symptoms that work for you.

You might want more coping skills, and you might need new ones as symptoms change. But thinking about it as “This is a new label that will help me a) get better treatment and b) find things more easily that can help” has been a lot less scary for me sometimes.

2) It’s really worth rearranging the stuff you do all the time to make it easier for you.

For example I have issues with dropping stuff, especially if I’m tired. I no longer use glass much at home, I use pottery or something that won’t break, and use drinking containers with lids and handles much of the time now . Cleaning up glass shards sucks. Cleaning up pottery shards = a lot easier. Not dropping it in the first place = even better.

Support groups online for specific conditions can have some weird dynamics, but reading them and looking for the tips that other people use can be really useful. (Someone else-net recommended http://healingwell.com today, and a brief look suggests it might be good for that kind of skimming.)

3) If you’re looking to move or make household changes anyway, look for options that reduce stress/exhaustion/stuff you really hate.  

I moved about 3 months ago, and went from a 2nd floor apartment where I had to lug the laundry downstairs, into the car, and drive to the laundromat (or haul the trash all the way around the building.) The new apartment has glitches, but the fact it’s only about 8 stairs up or down to/from the parking lot, and the fact I can roll my laundry to the washer and dryer makes up for a lot.

(I also basically only have clothing that can be washed together without having to think about it, except for a few special events outfits. The amount of mental and other energy this saves me is huge.)

If your resources allow, outsourcing tasks you really struggle with can be a huge win (occasional cleaning service for the heavy cleaning I have trouble managing has been a lifesaver a few times in the past few years, also I am SO HAPPY now I have moved somewhere where I can get delivery food and groceries delivered if I need to.)

4) For exhaustion related things, I have gotten a *lot* of mileage out of a technique I got from a chronic fatigue resource - which is to plan on doing 80% of what I think I can do in any given period of time.

(There are times that I just really *have* to do more - when I was moving, for example. But when I can plan not to? That helps a lot.)

If I discover I have more energy/focus/attention/time, then I always have a list of “If I have spoons, I’ll also work on this” in my head, but if I plan for the 80% level, I don’t end up feeling constantly frustrated that I’m not getting my list of things done.

5) Related, I have found that any improvement I make in stuff that affects my quality of sleep tends to repay itself very quickly.

(My bed includes a really excellent and extensive body pillow, a wool mattress pad that helps with temperature regulation, really comfy sheets, etc.) The down side is that it makes travel even more exhausting than it might be otherwise, because Not My Bed.
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