I'm not sure how coherent this will be, as I am going to be jumping back and forth between your post and my reply....
I think when you get on the internet and read forum of people who have MS, you need to remember this: most often you'll find those folks whose MS is more disabling. Perhaps they've had serious exacerbations early on, or have had it for a long time. The folks who have an exacerbation...and then recover completely (or nearly completely), are going about their business without complications, and don't spend time on the internet on medical-related forums.
I've had MS since 1983. I was 35 at the time it was diagnosed....but it became evident, after taking time to thoroughly trace my medical history, that it was likely I'd had MS since 1969 or so -- when I was 21, newly married, and having physical problems, which I attributed to: being fat, being stressed, being clumsy, being out of shape...and didn't have medical insurance anyway, so didn't pursue the
times when I would fall down unexpectedly, or not be able to walk on a gravel path without twisting or spraining an ankle, or peeing in my pants and attributing it to an over-active sex life (I was newly married...), or...any number of other symptoms of MS which I didn't know was MS at the time .. but if I had, I'd have been one of those folks who assumed I had a mild and transitory version of MS, and wouldn't have done much about it except what I did do: go about my life, working as a librarian, a teacher, then a disabilities consultant. I was probably what they'd call "relapsing-remitting" -- I'd have a "spell" where I was particularly clumsy, or fell down and seriously injured myself (by the time I was diagnosed I managed to break an ankle, both knees, seriously bruise one elbow, break the other ...all at different times...), and then I'd be fine for months, even years -- 14 years between some early episodes and when I was then diagnosed...
It wasn't until my first major and quite debilitating exacerbation -- which paralyzed me from mid-torso to toes, lost vision in one eye, lost color vision in the other, loss of control of bowels and bladder, etc.... that the MS really had an impact on my life. It was right prior to this exacerbation that the MS was diagnosed...and then the exacerbation, which confirmed it .
From that exacerbation forward, I have always had symptoms that have never gone away. I have experienced numbness and tingling from torso to toes; I have had bladder incontinence (now controlled by medicines); I have very poor balance (I tip over even when sitting unless I'm in a chair with arms); I have had weakness in my legs.
The leg weakness -- when I was in the hospital I was totally unable to move my legs. They would not support me to stand on them. I had no sense of my left side (there was some thought that I might have had a stroke, but that was ruled out). I was released from the hospital after 3 months, and was in a wheelchair. Through physical therapy I learned to walk again, first with a walker, then two forearm crutches, then one forearm crutch, then a cane...but cycling back through all these mobility aides as I experienced 2-3 exacerbations a year. (Remember, this was long before any of the meds were available.)
Then slowly, over time, my legs grew weaker, less able to support me. I used the wheelchair more and more...and now all the other mobility aides are cluttering up my closet. I should get rid of them one of these days...and start shopping for a scooter or power chair...
Working: I don't know how old you are, and don't know what kinds of benefits you may have. But the fatigue that is part of MS -- the unrelenting debilitating fatigue that can suck the life out of you -- is the primary reason why many people stop working long before any other physical symptoms demand that of them. It sounds like you're able to do some work from home. You may need to start thinking about how you can do more of that...or less work...or work in different ways, if you need to keep working because of the income issues. I had to quit my job about a year after my first major exacerbation, because I could not any longer be a dependable employee. This was long before things like the Family Medical Leave Act (which allows you to take time off..without pay...to tend to illness, if you've used up your sick leave), or disability insurance. I simply could not drag myself out of bed each day, work an intense and demanding job, go home, crash into bed, and get up the next morning to do it all over again. And my job demanded I be on my feet -- and that was not possible.
I quit my job, my husband quit his, we moved back home and were unemployed for a year while he was searching for work. He found a job, and I continued to recover -- took 5 years -- to a point where --
while I still experienced fatigue, bladder incontinence, numbness, tingling, weak legs, loss of balance....I felt well enough to do some independent consulting, become president of a big-city League of Women Voters chapter, chair an ethics committee for that big city, do some volunteer stuff for my church..
but yes, I dealt with all those symptoms. The good part of not working for pay is that I could rest when I had to, nap in the afternoon, sometimes call up people and tell them I couldn't do what I'd promised...tough, for me...
Today -- I deal with fatigue. I get up at 6 a.m., but am in bed by 8 p.m., pretending to watch TV, but generally sleeping. I do better if I get a chance in the afternoon to lie down for an hour or so. I do some work by internet and phone, and occasionally a consulting job, but pay for it for the next several days, completely exhausted. I'm still numb from torso to toes, tingling and spastic legs and thighs, and occasionally cramping hands. I've lost much of my "fine motor skills", meaning I can't grasp narrow things like pens, and have to watch to be sure I'm grasping a cup of coffee. I get esophageal spasms (see the other thread). I have bladder control issues, and occasional bowel control issues. And yes, I use a wheelchair full time. I'm not able to do much more than transfer from chair to bed, or chair to toilet, or stand to grab a can off a shelf.
I rely on SSDI, my husband's retirement income, he now is on social security, some investments that we inherited, which I manage to re-invest as much as possible. We pay dearly for group health insurance from his work (he is now retired), primarily because it will pay for hospitalization (which social security won't pay for).
And yes, I do stuff...a lot of stuff...knowing that I'll pay for it the next day. Like today -- my husband and I drove to the next big town (we live in rural Wisconsin) where we shopped in several stores, had lunch, did some more shopping, got groceries, some other errands...and now we're home. And I was supposed to go out to eat with him tonight. I just sent him off by himself, as I am wiped flat -- it's only 6 p.m. here -- and when I finish this, I'll be in bed.
When I do my contract work, I'll be in front of people for the day, get back to my hotel room, and crash in to bed, often without eating, as it's just too much of a chore to even raid the snack machines.
The fatigue, compounded by all the other symptoms..oh yes, and the tinnitus (ringing in the ears) which is relentless, and the occasional shooting pains up the side of my face and the back spasms and shoulder cramping...all can wear a girl down.
I'm 59, by the way. Some days I feel a good 20 years older. And yes, I'm often grumpy (don't break into tears, though...only did that while going through menopause) and the grumpiness is exacerbated by the fatigue...which is why I sent my husband off tonight by himself. Hanging around me right now wouldn't do either of us much good. We've been married 38 years; I wonder why he continues to put up with all this ..uh...carp.
But there it is. Let's see if MY long tome will make the list! :)
Feel free to ask questions back. If I can be helpful, I'll try.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....