Wednesday, May 30, 2012

Undiagnosed and symptoms prevail

By peace girl Friday, December 17, 2010

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!)

Lisa Emrich, Health Guide
12/22/10 11:04am

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.

 

Anonymous
lara
1/ 6/11 7:28pm

Peace Girl, you are surely not alone...there are many of us who have these crazy symptoms, and muddle through every day.

 

I too know the wobbly knee situation. And it is a reminder that I am in a neuro attack....it isn't one of the first symptoms I have in a attack, but it seems I'm going along walking minding my own business, and suddenly my leg doesn't seem to want to tag along anymore...it had progressed up to my hip now. If it lasts more than 20 mins I have to use a cane otherwise i can't be sure i could walk far without wall walking!

 

I was in the same place you were, but taking less meds, just baclofen when i absolutely couldn't stand the pain any more. Had regular attacks documented over 7 long boring years. I have the technical dx of MS, but not the label of MS my mri's are clear. I have one daughter with neuro attacks, and demyelinating lesions o"n her thoracic spine.>

I have a central demyelinating disease of unknown origin". duh.

not sure what i'm supposed to do with that. I often think about calling the Nat'l MS society, but I just don't know if its worth it.

 

My attacks seem to have simmered down to twice a year prolonged with most of the symptoms you experience, and then some. But I find that everyday I'm battle something. It never quite leaves me, if i get overheated it all cascades down on me too.

 

Please hang in there, it's a dx of ruling everything else out. Get copies of all your blood work and test results,i can't stress that enough. Take the b12 it will help, i have low vit d too, but haven't followed up on that, i take a great vegetarian multi vit everyday from a reputable health food store. and cod fish oil capsules now too.

 

Take good care of yourself, no matter what the problem is called, it is a chronic illness, and you must take care of yourself. Pick your battles, spend time everyday focusing on what gives you the most peace.

 

keep us posted on your progress!

take care

la

1/ 7/11 3:00pm

thanks lara.  its so great to have this community here.  hearing other people's stories make me feel comforted.

 

i had another brain mri and will talk with the neuro about the results next week.  ill keep the community posted.

Anonymous
laz
1/ 7/11 2:38pm

would love to hear more from youLaughing

1/ 7/11 3:05pm

well this is weird.  we're the same age and similar symptoms.  try this- last week i got what ive determined was 'frozen shoulder'.  i had no idea what was happening to me.  but i had incredible pain in my shoulders one day when i woke up that wouldnt go away.  i know its not my bed because a few years ago when theis all started, my husband insisted that we go out and buy an expensive mattress to rule out that my weird smyptoms were being caused by a bad mattress.

 

well i started realizing that i had to pop my shoulder back into place.  so weird.  im left now with lingering pain, not too bad- im used to a dull sense of pain.

 

im on the baclofen and yesterday called my neuro because i woke up with heavy legs that were twitching.  it scared me.  even though it didnt hurt like muscle spasms, it was alarming. 

 

 

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By peace girl— Last Modified: 10/26/11, First Published: 12/17/10