Hmmm....

     Good question.  Not that very many people have actually asked me.  It's pretty damned incredible.  The majority of my friends and family are mostly apathetic about it.  (sorry people if that offends you or makes you angry to hear, as the one who's been dealing with things alone, it's true.)  
     I had my first symptom over six years ago - my left leg started having pretty severe pains and cramps that lasted for weeks at a time. I went to the doctor after it didn't get better and he sent me to a physical therapist - maybe my left leg was weak and needed retraining.  (I dunno, my right leg never looked like it was doing all the work to me...)  I went to the physical therapist who was great.  The first time was a general stand and walk and turn and twist and after all that she said she thought I looked fine on the initial exam, and she didn't see anything wrong or see anything that she could do or anything I needed, but the order was for 4 appointments, so did I want 3 massage treatments?  Of course I said yes.  When I went in for the next treatment we both noticed something funky.  Whenever she'd touch me and I wasn't expecting it, it felt almost like a shock and I'd jump a foot off the table.  She noticed some other things - my reflexes were off, some were exaggerated and some not strong enough.  Hmmm.  We did the massage treatments and she gave me home exercises for my legs, which were constantly still cramping (but she couldn't find anything that PT treatments would help).  She sent her report to the doctor and I went back to him.
     The doctor at the time thought it was MS (multiple sclerosis) and sent me to a neurologist.  I had a MRI of the brain and neck and as there weren't any typical signs of MS on the MRI, I was told take a pill when the pain got out of control and was sent on my way.  
Within a year other things started to pop up that weren't "normal".  The continual pain and cramps moved to other parts of my body, my right leg and both arms, my back and belly muscles (I joke that I don't own any but I guess I do).  I started to have almost seizure-like spasms, most of the time just in my upper body.  Sometimes it would just be in my arms - they'd flail out, usually just one, starting from the torso moving out in a wavelike movement.  Sometimes it would be more of the body, starting at the waist/hip and moving up and across my body, across my chest and shoulder with my arm flinging and my neck twitching, making my head spasm.  On a good day this would only happen once, but usually it would happen for five or ten minutes at a time.  Normally it would happen at night, around 10:00 PM or so.  I live alone, so people didn't see it a lot.  Once or twice it did happen at work.  Sometimes my legs would kick out.  I tried to explain it to my doctor and they always explained it away as the twitches you sometimes get when you're falling asleep but that isn't it at all.  Sometimes, rarely (thank GOD), I'd get these during the day when I was out and about.  Only once when I was driving.  Once when I was shooting archery - I got a bulls-eye on someone elses target.  We were able to laugh that one away.  *G*  These weird movements have come and gone, sometimes severe and sometimes not so bad, for about five years now.  Right now some of the meds I'm on are used as anti-seizure meds (although that's not why I'm taking them) and interestingly enough, my twitches are peacefully sleeping.
     Back to my time-line....  The docs hmmmm'd and sent me to a different neurologist who looked at my left leg, and found that I had residual nerve damage from when I fell and injured my leg several years before all this started.  Eureka!  He found something!  It had nothing to do with why I was there, but he felt triumphant!  He said the pills I was taking for the leg pain should be enough help (I'd told him that they were only mildly adequate), and sent me on my way.
     I'm not sure how much later it was, but at some point, about three or four years ago, I started to have a hard time remembering words and phrases.  More than what happens "as we get older" but a lot.  I have hours or days where I don't want to talk to people because I know that almost every noun that i need, I won't be able to find.  Or I'll lose a specific item for an extended period of time.  My favorite, partly because it amuses me and partly because it's such just odd, is that I lost the word "silverware" for I don't know how long.  It felt like forever but was probably 3-4 weeks, maybe a month.  I knew what it was I meant, and if I was at a restaurant I'd ask for forks & knives or utensils. I was at Red Robin one day with some people from work and "utensil"s wasn't coming to the surface right way, but "cutlery" did so I asked for that.  The waiter looked at me like, "freak" and said, "You mean you want some silverware?" and I was soooo relieved!  I had the word back!  Because until then I really didn't know that the word was missing, if that makes sense?  It was the first time that I was really AWARE that I was having trouble with word finding.
     I was having other problems as well.  I was always sleepy.  If I didn't have to work, on the weekends I'd sleep until 2:00 or 3:00 PM, and go to bed at 10:00 PM, and during the week I'd have a hard time staying awake.  That changed about six months ago.  Now I'm always sleepy, but I'm lucky to get 5-6 hours of sleep a night. There were all kinds of intestinal problems that people don't want to know about (and I promise I won't share!).  Every once in awhile I'd get dizzy, sometimes when I stood up or bent over, sometimes just out of nowhere I'd feel faint.  I had what I called "personal earthquakes".  I'd be walking and it would be like the ground would jump or like I'd miss a stair.  I'd lose my balance and have to catch myself on a wall or counter, and occasionally actually fall over nothing.  My immune system has been incredibly weak - I've had pneumonia several times, bronchitis and other things.  I found out that my vitamin D level was the lowest my doctor had ever seen - not something to be proud of.  All this going on for several years, and through it all, the one thing remained..... my muscles in constant spasm.  
     Then I fell last July and hurt my left knee.  VERY long story short... my knee cap had been knocked out of alignment and rotated, which was causing difficulty walking, inflammation and pain.  I have a knack for finding doctors and physical therapists who don't know what they were doing, so after five months of mis-treatment, I found a physical therapist who know what she was doing.  My left knee and leg was in severe pain at this point.  I was having to use a cane to walk, and taking pain meds daily.  (They didn't really work a lot, but they took the edge off.)  The new physical therapist treated me for two treatments and we could tell it was really on the mend, but my right leg started to really bother me and well frankly...it hurt.  At lot.  She looked at it and thought that maybe it was hurting because it had compensated for the left leg so much.  She worked on it and gave it an adjustment and it felt a lot better.  It felt better for a couple days, but by the time my next treatment came around it was really hurting again.  My left leg, on the other hand, was doing amazing.  If I'd been able to tap-dance, I'd have been tap-dancing on it. Odd......  The physical therapist checked out almost 100% healed left leg and declared it better, and worked on 95% non-functional right leg.  Neither of us could really figure it out.  I had some exercises to do for healed leg, she said not to do them on the right leg that was now messed up.  I came back for the last visit - really weird.  Hmm..I hadn't injured the right leg.  Left leg was better.  She couldn't find anything WRONG with it.  It just HURT.  She's an awesome physical therapist.  She figured out what was wrong with my left knee where another physical therapist and two .....knee doctor people/one surgeon (lost the word) couldn't.  But she couldn't figure out my right knee, and we both knew that I hadn't hurt it.
     Everything else was starting to hurt too.  My hips hurt all the time.  Dang, my couch was really uncomfortable because my back and knees and BUTT hurt when I sat in it.  I tried the recliner.  Well it's worse there.  My upper back really hurts too.  All the time.  Hurts sitting at work.  It aches, and burns....and when I move it's really tight and pops.  Sometimes it feels like someones trying to pop my kneecaps off with a dull spoon.  Then it feels like someones sticking a big needle into me, like maybe a needle that's about 8" long.... like when you get a Novocaine shot, into my belly or my upper arm or my thigh.  And then there are the days when there's no shot or needle feelings, but feels like there are nails being driven into my joints....and all the time my calves and thigh muscles are cramped up, not quite like a Charley horse but pretty danged close.  That's a constant feeling, and the skin on my calves always feels tight too.  
     Oh, I didn't mention the migraines!  Yea!!  Migraines!  I've had those for a long time, before I moved up to Oregon.  They started getting worse about maybe four years ago.  I can't describe a migraine.   What I can say is that when things started ramping up earlier this year, it got so that on a good day .... aaaaargk.  My head squeezes in and my eye sockets feel smaller than my eyes.  The inside of my skull aches dully, constantly.  The back of my skull, where it rests on my spine, presses down and it feels like it's compressing and needs to be lifted up about four inches.  This isn't a migraine.....but a microshift to the left and it could be a migraine in a second.
      The thing that's really bothering me the most isn't the most painful, but it's probably the most dangerous.  It's the dizziness and possibility that I could faint at any time.  I can joke around about the other stuff, even if inside I'm really wanting to cry most of the time.  But the dizziness....  Not so much.  It started out innocuously enough, and with stuff that I've heard a lot of people have.  I started to get a little bit dizzy, for a short time, when I stood up suddenly or if I leaned over to pick things up.  Then pretty much out of nowhere, I was dizzy almost all of the time.  I'd reach overhead to get a plate and have to catch myself because I'd be tottering.  Lean over to get a pot from a cupboard, same thing.  Go upstairs?  Better plan on an extra couple minutes because I'm going to need time to sit down when I get there.  It's got a lot worse recently.  I always make sure that I walk where I can hold on to something and have one hand free.  I've lost my balance (more than just a little wobble) several times in the last few days, and have "grayed out" a couple times, but I haven't actually fainted.     
     I was off work for six weeks in late June and July.  Mentally, I can do the work but I'm a lot slower than I was.  A lot.  I'm worried about keeping up with my desk.  There isn't room for slack, and the office manager has showed in the past that she will do everything she can to get rid of people she doesn't like and she's made it clear that she doesn't like me.  I can barely afford to live on what I bring home now, so partial pay from disability is a really scary thought.
     It's late and I'm starting to ramble.....  :)