Anyone else kind of surprised? (Trigger warning, new MSers)

[Thinkimjob]

Perhaps this is the perverse nature of MS. I truly never imagined that things would ever feel the way they feel.

I suppose it is like any condition - you can't really know what it is like, unless you have it.

Numb finger, bit of ON, for ten years, and suddenly after all those years of worrying about winding up worst case scenario, walking, are you mad?

Bizarre muscle twitching, (well, thumping violently up and down would be more accurate, try that while you shave your legs) stairs, again, are you mad?

I don't know what I thought was going to happen, but not this.

[ClearBlueSky]

The trouble I have doing things amazes me. It all used to be so easy. Dropping things, I mean everything and anything, then trying to pick those things up. Signing my name is a chore, any more. Stairs (are you kidding me?), forget it. Lawns,too. I avoid them all. Even thresholds can be troublesome. Heck, walking down the hall unaided is tough. I had the bizarre, muscle twitching. Wow. I just sat there and watched it. Amazing. Absolutely amazing.

So, yeah. Like you said, I don't know what I thought, but I never thought I could, would, ever be like this.

[alishape]

Quick ?

What is a trigger warning?

[JerryD]

I get what you are saying, completely. Wouldn't it be nice if there were books or pamphlets, from the MS society, that explains and 'exposes' the 'reality' of living with MS. And the awful progression that is typical in MS.
I have been finding 'new' surprises almost every day with my body failing to perform as it once performed. The truth is that once you have MS, MS has you. I don't care what the common saying is saying! That saying is disingenuous! You have to be pretty gullible to believe that!

[tracibk]

I took a shower and shaved......my body feels like I have run a marathon. "got to take a shower" turned into "crap....I need to shower!!" Just the thought makes me tired

[rdmc]

I get what you are saying, completely. Wouldn't it be nice if there were books or pamphlets, from the MS society, that explains and 'exposes' the 'reality' of living with MS. And the awful progression that is typical in MS.
I have been finding 'new' surprises almost every day with my body failing to perform as it once performed. The truth is that once you have MS, MS has you. I don't care what the common saying is saying! That saying is disingenuous! You have to be pretty gullible to believe that!

I'd say my surprise is that the disease affects so many parts and functions of my body. I figured mobility could be affected, and I've had the tongue/speech problems from the start, but all the autonomic and other bodily dysfunction was a surprise.

I will give kudos to my doctors because they have done well in providing symptomatic relief
through pharmaceuticals. I could start my own pharmacy, but each med has a function, and work on a specific problem, and of course, once I had the pump implanted, it was like winning a Golden Ticket I still can walk, not far, but I can do it, and that is huge. I have nothing but respect for those MSers who have to use a wheelchair.

Think, you said you didn't know what you thought would happen, but certainly not with the problems you have now. I think the "not knowing" or "not imagining" what might happen is probably part of a coping mechanism we have. It works till it doesn't

[Thinkimjob]

I get what you are saying, completely. Wouldn't it be nice if there were books or pamphlets, from the MS society, that explains and 'exposes' the 'reality' of living with MS. And the awful progression that is typical in MS.
I have been finding 'new' surprises almost every day with my body failing to perform as it once performed. The truth is that once you have MS, MS has you. I don't care what the common saying is saying! That saying is disingenuous! You have to be pretty gullible to believe that!

Ah, JerryD, there are plenty who would and do say, "turn that frown upside down". Not me. Not you. And ironically that does make me feel better. , .
It truly helps.

The idea that you're somehow failing as an MSer if you can't really see "blue skies, through the tears in (your) eyes" (Rocky Horror Picture Show, poor old Tim Curry, Frankenfurter, had a bad stroke a few years ago OT), kind of annoys me.

Okay, I'm not feeling particularly perky, doctor, so do I need anti-depressants or do I need better MS drugs and some sort of hope for the future?
Do people with cancer get anti-depressants or do they get drugs that really do work? (Or both, I don't know. Mum had breast cancer, and they weren't prescribing anything other than chemo.)

Anyhoo. Left hand today has mysteriously gone completely numb. No, not a so-called pseudo exacerbation.
What could it be, what could it be, I wonder.
Flare, progression, both?

Plus side I am right-handed.

[KatieAgain]

Yes...it really did surprise me. Because those first years with MS were so benign. Then WHAM...it hit with a vengence.

I agree with RDMC that this affects so many parts of the body and Jerry's point is spot on. People are not educated on what MS can really do to someone and shame on organizations like the drug companies and even NMSS that suggest that you will live almost normal with MS. When the fact is some will, most won't.

My doc does pretty good symptom relief...but there is not a magic pill for everything. The DMDs...my opinion is different on any given day. Anti-depressants...take them if you can.

I personally will smoke Pot once it becomes legal in my State. At a minimum, it will improve my attitude.