I Can't Believe I'm Writing Here Today

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crzbarbie
New Member


Date Joined Dec 2009
Total Posts : 6
   Posted 12/4/2009 11:38 AM (GMT -7)   
I'm not even expecting any answers.  Maybe I'm just venting.
 
I'm frustrated.  I'm sick and tired.  I'm depressed.
 
Long story. Firstly about eight years ago I wake up with right side of face drooping.  After going to ER I'm told I have Bells' Palsy.  But I don't just get it once.  Face gets back to normal but about ALMOST a year later I wake up with it yet again.  Then...
 
 Five years ago I was told I had a mild stroke.  Went to my local hospital.  Felt exhausted.  Extreme dizziness.  Facing drooping.  Weakness and tingling down the right side of my body.  CT showed stroke.  Was shipped off to the big city of Toronto, Ontario.  Nope they said I didn't have a stroke.  What??  Told I was suffering from Conversion Disorder.  A disorder where patients present with neurolgical complaints but where no neurlogical explanation can be given.  Okay??  I'm sent home.  For months later I am suffering from "buzzing" in my head and right side tremors and weakness.  Family doctor won't even consider it and automatically puts me on anti-depressants.  Fine.  But symptoms don't go away.  Finally a friend gets me in to see another Neurologist who gives me a EEG and MRI.  MRI comes clear but EEG does show seizure activity coinciding with the symptoms I describe.  Great.  I'm prescribed anti-seizure meds.  Once the right dose is found I feel like a new woman!  IT was amazing.  The "buzzing" was finally gone as was the tremors.  I have felt pretty good ever since.
 
A month ago I was sitting at work at break in the cafeteria and in front of everyone I suffered another seizure.  I'm so exhausted I can barely move.  ER says it was a seizure and sends me home with instructions to call my Neurologist.  He revokes my license.  Great.  I live up north and this is a struggle but understand and would never forgive myself if something to happen while I'm driving so I don't drive.  The only diffference from other seizures I have felt is this time I'm so very tired.  For weeks afterwards I'm still dragging.  AND the fact that my middle finger and index finger are numb and have pins and needles the next day and it last for over a week.
 
In all honesty I haven't felt well in a while.  Extremely tired. 
 
Neurologist sends me for yet another EEG and MRI.  This time EEG was good.  MRI shows white lesions.  Could be indication of aging or could be indication of something else.  Neurologist wants to wait and do yet another MRI in June of not only brain but also a full spinal to see if there is any change.  He has upped my meds.
 
I'm tired and frustrated.  I THOUGHT we had the answer and I was on the mend.  I didn't expect this.  Was hoping for him to say it was a hiccup and I'm back on track.  Didn't expect to hear about white lesions.  Or that he wants to MRI spine.
 
Bleck.  I'm just frustrated.

crzbarbie
New Member


Date Joined Dec 2009
Total Posts : 6
   Posted 12/4/2009 11:54 AM (GMT -7)   
Forgot to mention that about the same time I had Bell's Palsy the first time I get bouts of vertigo or BPV Benign Positional Vertigo.

Fun fun fun.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 12/4/2009 5:38 PM (GMT -7)   
Hey Barbie,
 
I hope it is ok that I am responding.  I couldn't tell if you wanted someone to or not.  You certainly have a lot of symptoms that are very MS like.  Was the BPV ever successfully treated with therapy?  They can adjust your body position and get those little weird crystals in your inner ears to go back to where they belong and then the vertigo resolves.  If they did successfully treat that, then that removes the vertigo from your MS like symptom list. 
 
If you have MS; your location makes things difficult.  MS is very expensive to treat.  This makes it hard to get an MS diagnosis in Canada.  You will have to be very assertive to get to the bottom of this issue.  It may take a long time. It can take MSers months and even years to get a diagnosis.  Some Canadians will cross the boarder and pay for diagnostic tests in the US.  I wish you the best of luck in getting your answers.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


half-full
New Member


Date Joined Dec 2009
Total Posts : 3
   Posted 12/9/2009 2:49 PM (GMT -7)   
Barbie,
I hope that this day finds you a little closer to whatever is at the bottom of all your symptoms. I agree with Gretche, many of the things you describe certainly could be indicative of MS, enough that I would want it thoroughly investigated. Not that it helps much but I'm sending positive thoughts your way and hope you'll keep us posted.

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 12/9/2009 5:13 PM (GMT -7)   
Dear Barbie,

You've been through a lot! I'm so sorry....I know what it's like to be in diagnostic limbo. You've heard from expert previous posters that your symptoms do sound like MS, but that every possibility should be thoroughly investigated.

Just a thought....has anyone ever mentioned CADASIL as a possibility? I don't know much about it except that it is a neurological disorder characterised by repeated strokes. It may be easy to rule out, because I think there is a genetic test for it (although I could be mistaken).

You're in my thoughts and prayers! I hope that you find your answers very soon!

(((hugs)))
JoAnn

P.S. I just had my license taken away too, because of vertigo and double vision; I do sympathize!
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crzbarbie
New Member


Date Joined Dec 2009
Total Posts : 6
   Posted 12/10/2009 10:42 AM (GMT -7)   
Hi everyone,
 
Thank you so very much for your replies.  Things haven't changed much here.  Nothing is going to be done until June so I am trying to be patient.  To be very honest, I'm not sure I want to anyway.  I'm frightened and am afraid of the answers I'm going to be given.  I'm trying not to think about it.  I know if you look at things hard enough and deep enough you can always find bad, so I'm waiting until the professionals look at it so I don't worry myself until it's time to worry.
 
As for my BPV, yes the symptoms go away when the maneouvers are done.  But only for a while.  It seems the older I get the more it seems to be a regular thing.  I only have relief from it for a few weeks at a time.  I am only 43 but it seems I'm feeling older than that lately.lol
 
I have a question, is MS heriditery? (pls excuse my spelling)  No one has it in my family except a cousin by marriage.  Would tinnitus also be something i should mention to my neuroligist as well?

Post Edited (crzbarbie) : 12/10/2009 11:34:07 AM (GMT-7)


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 12/10/2009 5:36 PM (GMT -7)   
From how you explain your BPV, that sounds about right for just plain old BPV.  That doesn't seem neurologically related.  The tinnitus is something you should tell the neuro.  MS is only slightly hereditary. Does that make sense?  The neuro may ask about that.  There is no one anywhere in my family that has MS. 
 
You have the right attitude!  Try not to worry until they give you something to worry about.  Just do the best you can.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


crzbarbie
New Member


Date Joined Dec 2009
Total Posts : 6
   Posted 1/20/2010 8:57 AM (GMT -7)   
Hi!  Thank you so much for the posts and support.  I am just feeling alone and lost.  I try not to say too much at home cause I don't want to scare my husband.
 
He does know that a couple weeks before Christmas, that numbness and pins and needles I got immediately after the last seizure returned in my left middle and index finger and lasted approx. three weeks.  It's gone right now.  But what is strange is that I am getting that very same feeling in my right leg MOSTLY and sometimes in my left leg.  My first thought was how my mother had a heart condition.  Bad circulation.  But if it were that wouldn't it be only on one side and not the other?  This doesn't make sense.  Maybe it is conversion disorder and I'm crazy.
 
Anyway, hubbie has been bugging me since befoe Christmas to get into the dr.  I have been avoiding it because now that I was told the very very first time that it was Conversion Disorder I question myself.  But I gave in this morning and called the dr.  The only reason being was because yesterday I found a strange rash showed up on my face.  This morning it's a little better but still there.  But thought I should see the doc and while I'm there I'll tell him what has been going on.  See if he thinks this is something I should be telling my neurologist or whether we should be checking my circulation.
 
Oh my gosh, I feel like I'm some crazy hypocondriac (sp?).  But I don't want attention.  I don't want this crap.

crzbarbie
New Member


Date Joined Dec 2009
Total Posts : 6
   Posted 1/20/2010 8:58 AM (GMT -7)   
Oh forgot to tell you that I have been booked for my MRI for May. So here's hoping one way or another it clears things up for me. I am just at the point I want to know what is happening.
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