I call it wobbly knee syndrome. That's one of my key identifiers that I'm in an 'episode'. Along with this I often feel paroxysmal pains; sudden and often intense pains lasting from 30 seconds to an hour, and sometimes leaving a linger pain or dull ache as a reminder.
One thing is so for sure, when we are in tune with ourselves, we know much more. For me, life is full days of over stimulation. And over stimulation = onset of stronger symptoms.
Yesterday was a full day and I knew I would be wiped by the end. I am a high school teacher. The kids are typically high energy;and with winter/holiday break in sight, I'd say they are even higher energy. And who am I kidding- I'm high energy too. So, needless to say, its been overwhelming/ over stimulating.
Yesterday I put everything I had into letting my classes prepare foods in my Family and Consumer Sciences classes. Sharp quick pains started leading me to sit for instants and regain my composure.
Last night's holiday family phone drama led me to a shooting muscle spasms, kind of like an electric shock feeling in my neck that ran almost instantly up to my head and down my spine. Today I feel a residual ache (a place in my cervical spine that lives with chronic pain- one doctor suggest De-generative Disk Disorder, then upon referral the orthopedist said nothing abnormal, a sign of aging- FYI I'm 35 years old and previous healthy and active).
Other symptoms include: the tightness of my butt cheek muscles (otherwise known as my gluteus maximus muscles), sharp pains in my left foot, pains and aches in my right knee, shortness of breath (as I was Christmas shopping at a local book store- very mellow, I was the only customer in there at the time and I notice I was gasping a bit for air, slow I slowed down and started taking intentional calm, deep breathes), headache, and what is strange and confusing but slow, challenged walking.
I live daily with odd experiences: pins and needles in hands, feet and legs, muscle rigidity (when my muscles tighten up and I have an almost impossible time relaxing them), blurry vision/staring episodes. Sorry to vent. Its just that people who don't experience this stuff, don't get it. And I'd love to share a conversation those that do - makes me feel comfort. I also just started writing a blog to share these stories. Please join the conversation. http://healingwithpeace.blogspot.com/
I'm seeing a neurologist and taking Baclofen among other things. I consistently take 4000 IU of Vitamin D, an anti depressant and an anti anxiety pill too. I can't say I've had a full blown exasperation since late Oct/early Nov.
My stomach often speaks to me aloud, my jaw often clenched, frequent trips to the bathroom to pee. Its becoming a lifestyle. I'm encouraged though by info on Vitamin B12 supplements and honestly interested but scared of information on gluten and dairy free diets (I've lived the dairy free diet for 7 years and just recently started 'treating' myself to dairy products - hard not to as an Italian descendant living in Vermont of all places!)



Hi Peace Girl,
With the holidays, it's been quiet around here. Sorry that your post has gone by without any response.
Being in that not-yet-diagnosed stage can be difficult. You're experiencing the bizarre symptoms which the "regular" folks around us don't understand. And since there isn't an official name for it all, it becomes even more difficult for others to relate. But what you experience is real.
I remember when I first started having real spasticity. It was extraordinarily painful!! Those poor muscles getting stretched in opposite directions and the strain it put on joints was not pleasant. Thankfully Baclofen is effective in alleviate most of this problem.
Wonderful news to hear that you haven't experienced a severe worsening (or relapse) since Oct/Nov. With time, the symptoms from your previous relapse might still dissipate. It can takes months sometimes. Definitely keep your neurologist updated on any changes you do experience.
With the shooting pains and numbness/tingling, has your neurologist prescribed anything to help calm them down? I use neuronton/gabapentin for this type of pain. Without it, I would have an elephant standing on my face and shooting pains in my legs/feet. Thankfully, I don't now. :)
Basically, I want you to know that you are not alone. Many of your symptoms are ones which I've experienced before. I hope that you are feeling well otherwise and avoiding any of the winter colds which might be circulating.
Keep well and please keep us updated on how you are doing. Anytime you want a conversation, we're here.