In limbo as well, and I'm also pretty confident that the worst is over. I had my last "real", unprovoked episode of hemiparesis and speech issues May13-14. Like you, I've kept having episodes of weakness, muscle cramps -- but since then they have all been caused by overexertion, heat, or lack of sleep. How is your sleep?
I just started on a med that is finally working for me in the sleep department (and in other areas too- muscle cramps, urgency!) and my symptoms, especially weakness, are really improving. I've been doing physio through the worst of everything in order to not end up with disuse atrophy in my muscles -- did the exercises yesterday and didn't go weak/numb. Decided to go for broke last night and have a piping hot bath. All seems to be fine. I do have another new symptom that hit this past week, but it seems to be resolving after a week.
Now, it's back to the treadmill -- the hard part is the frustration of beginning from zero again.. Maybe not zero, but it takes a bit to wrap your brain around no longer always progressing in the fitness area, but now having to play catch-up. If I get discouraged about anything, it's that. But (my new favourite saying) ... it is what it is :-).
It's been an incredibly long, very difficult four + months ... praying I have time to catch up physically :-). How long have you had symptoms? Is this your first flare?
Thank you for your reply. I have trouble falling asleep and trouble waking up unless its in the middle of the night to use the bathroom. With 3 kids on top of everything else I'm naturally exhausted most of the time. My first episode happened when I was 13 and I had shadows in my vision with excruciating pain in my right eye, some leg numbness, and when I would go to step down it felt like I was stepping on needles. I made the mistake of telling my parents and they thought I was crazy. They called in a preacher and sent me to a psychiatrist. At one point they tried to have me admitted to a psychiatric ward.
My vision was perfect before that. After that my eyes stayed messed up and I ended up with glasses and the eye doctor said I had "non-focusing" eyes. Shortly after turning 15years old it happened again and more symptoms. I ended up on a prednisone tapper and it helped some of the things. Eventually I saw another eye doctor who said I had damage to the nerve and that it was pallor then it should be.
After all of my kids I've had really bad episodes as well. I also had one in between my first and second sons. Each time I've only gotten worse and been tested for everything imaginable except ms. I gave up searching for answers because I got tired of being told I was depressed when I wasn't. It seems I have a long standing agreement to baffle the doctors.
After my second son I went back to the doctor and tried again. I ended up pregnant so I didn't get the MRI that was ordered. After my daughter I ended up seeing a headache specialist who told me I'm depressed. It's very frustrating. I finally had to ask to see a doctor more qualified to rule it out or in.
I guess 6 episodes in 10years isn't too bad but still frustrating. I've heard others have a lot more then that.
Wishing you a lot of luck and hope you get out of limbo too. what medicine did you start?
Amitriptylene, after failed attempts with melatonin, zopiclone, and oxazepam. I didn't realize how tight my right side muscles were until the amitriptylene -- it helped with the obvious cramps, but also with the generalized tightness. The actual sleep meds would work for a few days, then stop. I'd raise the dose, have two more good days, then they would stop working again.
I was just diagnosed with migraines, so I hear you. He spent a lot of time trying to dig into my family life, looking for depression. He looked disbelieving when I told him I had three wonderful kids and a husband who has been a great help :-P. I've had three very blue periods since this started, but am mostly optimistic -- frustrating to see when they head that direction! I probably am having migraines of some sort -- new thing happening that started a week ago, involving my left eye/blurriness, weird afterimages, light sensitivity and contrast sensitivity. However, I'm pretty sure that's not my overall diagnosis (wish it could be -- treating for migraine would be a whole lot easier than ms. I think I'm down to my last rule-out, at least at the level of pcp/gp).
I know exactly how you feel. It was hard for me to give up on activities that I loved, but eventually I realized that by pushing myself in order to still trying to do things I was just making things worse. And yes over exertion can and usually does bring on worsening symptoms.
Between a weakening of my upper body and cognitive problems I had to give up and sell my sailboat. I still miss that one a lot, especially having dolphins following my boat as they are attracted to the vibration of the center board of a sail boat.
I also had to give up to an extent my hiking ventures into forest areas. I would go off the beaten path so that I could photograph wildlife. I had to give that up because of balance problems and weak legs. Now I confine my hiking to handicap accessible trails and make the hikes for only about 1.5 to 2 hours in length. I don't get to see wildlife as before, but I still get to enjoy nature.
My third example is that I loved to go bowling. One more than one occasion I would bowl over 20 lines at a time. But again due to balance problems and weakness in legs and arms I had to give that up. But I still get to bowl kind of by doing it with a WII game console. This way I don't have to lift the weight of a bowling ball, nor the walk and slide of real bowling.
So in essence I believe the best option is to find ways to modify things you use to be able to do, or find new activities that you can enjoy without the over exertion.