I had what I believe was my first symptom....and the ones that's been lasting and that has progressed significantly of late.....fatigue. I went into my GP of many years. He was a good GP, but old-fashioned and old-school. He took blood tests, etc. -- just your basic GP workup. When I went back for the results, everything was fine. I was a vegetarian in excellent shape -- I walked most places I went (I was living/working in NYC), I lived in a 5th-floor walk-up and ran up and down those stairs like they were nothing, I walked a a fast pace (got it down to 10-minute miles! I'm tall with very long legs and essentially power-walked) 4 miles to work every morning (great way to start the day!) His answer to me: humans were supposed to be carnivores and I should start eating meat. I told him that wasn't going to happen and reminded him he'd just told me all of my blood work was perfect, including no anemia.
Two years later, I'd just gone back to school and was up early reading for school when portions of my left side went numb. It started with large portions of my left leg and my left foot going numb -- I thought they'd fallen asleep with me sitting in one position -- kept trying to wake them up, but nothing. I then realized that parts of my left arm and hand were numb. I scratched my face and realized portions of THAT were numb. That was it -- I thought I was having a stroke. I'd moved very recently to CT to go back to school -- I called the one person I knew, who set me up with her doc. They examined me, did some heart tests thinking I was sending air emboli to my brain. Meanwhile, I was talking to my parents in NYC and the old family doc. Long story short, I ended up going back to NYC. The old doc thought it was either a brain tumor or MS and referred me to a neurologist who was the head of something, including MS research & treatment, at Columbia Presbyterian.. He ran all of the usual tests, including a couple of MRIs (MRIs were pretty new at that point). The diagnosis was MS, with many of the tests pointing that way, including brain lesions.
The neurologist was great and gave me some great advice: Avoid stress, don't get over-tired and go out and live your life. I had to laugh at the first two, given that I'd completely overturned my life and just gone back to school after many years out.
I didn't succeed in avoiding stress, to say the least, and I got over-tired too, but boy did I ever go out and live my life! I finished school with tons of academic awards & honors and went straight to grad school. I went to grad school full-time while working 20 hours a week as a research assistant, teaching intro lab classes at the university, working at a school for kids with behavior and/or learning problems and working at a children's hospital (which is where I ended up doing the research for both my master's thesis and doctorate). I usually did two of these at a time....like working at the hospital and teaching one intro lab class.
I then completed a year-long intense internship at a hospital in Wisconsin (kind of a much shorter version of a physician's residency) followed by an equally intense 2-year post doc at a hospital in Chicago. I went to work full-time at a Northeastern hospital after that.
I had to retire early because the MS was making it too difficult to work anymore. I'd been able to get accommodations at each place I worked, but eventually those weren't enough. Though I was under no legal obligation to tell prospective employers (including the internship) that I had MS, I decided for my sake to do it. I was glad I did. The fatigue got awful during my internship year and I made arrangements to take a nap at lunchtime (I could down my fruit & yogurt lunch in a matter of minutes). After that, I told potential employers that's what I needed to do to get through the day -- it's just how I was more comfortable doing it. As far as I know, I never got shut out of a job because of it.
It just got to the point where the fatigue was too overwhelming and unpredictable -- a lunchtime nap was insufficient. That was really the thing that finally got to me, though I also noticed cognitive changes. One of my great problems which has worsened over the last 5+ years is cognitive activity (e.g., reading) leading to overwhelming fatigue. And with MS affecting more of my nervous system, stress began affecting me more and I was having more exacerbation. Well, none of this was leading to the kind of reliability my profession demands. As much as I didn't want to, retiring was the responsible thing for both my patients and for me.
A couple of years ago (? I lose track of time) I had an exacerbation that left me partially paralyzed -- I now use a wheelchair most of the time and walker for short distances, having gotten some of the use of my legs back. The fatigue continues to be pretty overwhelming -- some days, it hits 1/2 hour after I get up. I can't function through that kind of fatigue -- I usually end up giving in and going back to bed for a couple of hours.
Meds: Avonex (I get it free), multiple anti-spasmodics due to painful spasms.....baclofen, tizanidine & cyclobenzaprine, imipramine at night so I don't get up to pee as often, BP meds (docs feel MS has been part of my BP problems and I was the one who figured out I have autonomic dysreflexia, which sends my BP soaring sometimes) and a couple of other unrelated meds. I recently got on Inclusive Health (fed health insurance thanks to the ACA).....unfortunately for me, that means that two of my meds are no longer available to me. Nuvigil, which is the first med for fatigue that really worked for me and Aricept for my memory problems. I'd been getting both free because I had no insurance -- now that I have insurance, those programs are closed to me but with a $4500 deductible, I can't get meds that together cost about $700 - $800/month! Sucks. (Over the years I took other meds for fatigue -- all worked for short periods....cylert, ritilan & amantadine. The amantadine probably worked the longest but a few years ago I developed livido reticularis from it and stopped taking it.)
Warpy gave you great advice -- it's truly variable among different people. And he referred you to an excellent site -- the MS Society is a good place to go to get information. There were a few other sites I relied on early on -- I'll have to do a little exploring to find them -- can't really remember what they were and that was many computers ago so the links have been lost. There was one in England I found very helpful.....I'll try to find that and others.
But I go back to my diagnosing neurologist's advice: go out and live your life! And part of that can be reaching out to others to learn and find support from people who "get it." Even the professionals around me often didn't "get it" -- I'd get grief, e.g., because I never went out after work and never really socialized. Hell, it was all I could do to work full-time, get home safely and crash into bed! Weekends were devoted to the usual weekend errands and SLEEP, which lots of people with MS who work full-time do -- sleep TONS to make up for the exhaustion of the week, which is cumulative. I was always ready to die by Friday.....Saturday and Sunday were blessed sleep days to recover from the week and gird myself for the following week!
= new reply since forum marked as read
