How far would you go for a dx, any dx???

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tootles*
New Member


Date Joined Oct 2008
Total Posts : 6
   Posted 10/21/2008 6:45 AM (GMT -7)   
Hi everybody!  This looks like a great resource.
 
Here is my brief history.
 
about 10 years ago I had double vision, confirmed weakness on one side and unexplained crying spells which was not normal for me.  I'm a very happy person.   They checked for MS with MRI and evoked responses etc etc.  Got the all clear and everything was blamed on a possible virus.
 
Fast forward....about a year or two ago my middle toes start going numb for no reason.  It lasts hours to days.  Totally random.  I just basically ignore it.   When it happens I can't feel them at all. 
 
6 months ago I experienced a wicked case of vertigo for 2 weeks, the room would completely spin as if I drank a keg of beer all by myself.  It left as quickly as it came.  Never happened before and has not happened again. Did not get treated. 
 
4 weeks ago I start getting the same numb sensations in both my hands but mostly left.  Dropped several things.  This scared me so I went to the doctor.  I felt like *something* was spreading.   There have been times, at night, that my left hand/ forearm has been so numb that when I roll over it doesn't come with me.   Also after walking short distances my thighs twitch for about an hour.  Lots of little twitches that feel deep.  Like somebody is tapping their fingers all over my muscles.  I'm an avid hiker, been known to hike 15-20 miles in a single day.  This twitiching is VERY unsusual for me.
 
My physician said "You have the classic symptoms of MS" and ordered another MRI which I had yesterday.  It was an open MRI without contrast.  After googling for the last few days I now see that it should have been closed and with contrast.  I get the results in a few days.
 
Here are some other misc symptoms/conditions that I have had over 10 years.  Pityriasis, very temporary loss of vision when I get hot,  Terrifying hallucinations upon awakening, inability to move any part of my body but totally aware of surroundings.  This happens several times in a row and goes away.  It's been years since the last episode.  Ruptured disc which has been ruled out as a reason for causing my numbness.
 
Anyway, back to my original question.  I KNOW these things aren't normal.  But I feel like the MRI will come back normal again especially since they didn't do the best kind.  Since my symptoms aren't really debilitating I don't think I'm willing to push for a dx.  I went through so many tests (10 years ago) last time only to be told that they didn't really know what was going on.  I'm not sure if I want to go through all of that again.  It brings me down.
 
Is there a real benefit of finding out sooner rather than later whats going on?  Does early treatment help?  Do you think that my attitude is just a defense mechanism because knowing the unknown can be scary?  I just want to ignore it but I don't want to hurt myself in the process.   I see so many people doing whatever it takes to find out whats wrong with them and right now I feel the exact opposite.  Is there anyone out there like me?
 
 

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 10/21/2008 10:07 AM (GMT -7)   
Hey Tootles

Welcome to the board! U have had some serious symptoms that don't need to be discounted fully. Some things u mention can be benign such as u'r arms feeling numb after sleeping. I've had that many times...if i lay with my arms over my head when i wake they will be totally dead. They seem to be asleep...DEEPLY asleep...because once i get some activity in them they begin to come back. Some things u mention do sound like ms type symptoms, but keep in mind that there are many things that mimic ms. U might try googling 'ms mimics' or 'ms differential diagnosis'. Given that u'r doc is looking at the possibility of ms, i wouldn't at all say to stop where u are. Let u'r doc help u decide depending on the results of this mri. Yes, finding out if it is ms is important. Treatments are avail and do help if u have ms. I don't have ms. I'm in limbo for a dx of whatever is happening with me, but i do want to know. It CAN be scary to not know, but that is not a good reason to stop looking. Waiting for something to happen to force u'r hand on this is not a good idea. With ms the something that can happen could always be something much harder to deal with than u may expect. Just know that if its ms it WILL show it'self in time. Hang in there friend and keep asking questions and pushing for answers.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


tootles*
New Member


Date Joined Oct 2008
Total Posts : 6
   Posted 10/21/2008 11:24 AM (GMT -7)   
Rhonda, thanks for you kind and insightful posts. It helps so much to be able to put my thoughts out there and see a response. So often I feel like I'm just having these conversations with myself, inside my head, because I don't want to worry those around me. I'm going to do as you say and just let the doc lead me. If she stops, I'll stop...if she keeps going, so will I. Takes the pressure off of me.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 10/21/2008 4:06 PM (GMT -7)   

Hi Tootles*

Welcome to the board.  I am sorry you are not feeling well.  You definitely have some disturbing things going on.  You have a lot of symptoms that I have never heard associated with MS.  Now, we are not doctors here and we cannot diagnose you so that is just my opinion.  I have numbness that is caused by my MS, it does not go away nor does it move from hands to toes etc.  My numbness is caused by brain and spinal cord damage and that is permanent.  For most of us with MS, that numbness doesn't come and go.  The hallucinations, and the inability to move upon waking are also not at all typical for MS. 

Don't be too concerned with the open vs closed MRI.  If your doctor is satisfied the quality of the image, then trust that.  Also, the contrast is only used to indicate active lesions.  Lesions still show up just fine.  It is just harder to tell if the lesion is active or a scar or plaque from earlier.  The contrasting agent has been associated with allergic reactions.  They  typically don't use it unless a lesion is spotted. 

I would want answers if I were you. Hopefully you do not have MS and you will have a clean MRI.  Keep looking, there are many things that mimic MS.  Many of those mimics are completely treatable and managable. 

Good luck.   


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


tootles*
New Member


Date Joined Oct 2008
Total Posts : 6
   Posted 10/22/2008 5:05 AM (GMT -7)   
Gretchen, your info about the open MRI has put my mind at ease.  I was starting to feel like the one I had was a waste of time and money.  It's good to know that lesions will still show up even if there wasn't contrast and a closed MRI done.
 
I have read many, many posts in this forum.  It's the best resource/ms message board that I have found.  I'm starting to feel like I definitely don't have MS.  Although at first glance the symptoms seem similar, mine just aren't as intense as those that have been officially diagnosed.   There are very long periods of time that I feel perfectly fine.  My symptoms come, stay for hours/days/weeks and then completely go away. 
 
Have you guys ever noticed how you can put just about any symptom and ms in the google search and you can find some random study that relates the two?  No wonder my doctor was so eager to check for ms again, she's confused as heck.  smilewinkgrin
 
I'll let you know what my MRI shows, or doesn't show (fingers crossed that it's the latter)  

tootles*
New Member


Date Joined Oct 2008
Total Posts : 6
   Posted 10/23/2008 5:05 AM (GMT -7)   

Ugh, the more I wait for my MRI results the more I google.  The more I google, the more I find symptoms out there that I have had that I totally ignored.  As you can probably tell by now, I'm an "ignore it and it will go away" kind of girl.  Probably not the best way to approach my health but it's always worked for me. 

Almost exactly one year ago I was at a cross country meet to watch my daughter.  My left arm had sensations in it that I've never had and never had since.  It happened all day.  Here is the only way I know how to describe it.   You know how your tongue felt when you stuck it on 9V battery when you were a kid.  smhair (I hope I'm not the only one that did this).  Thats EXACTLY how the inside of my left arm felt.  It was almost nauseating.

I tried to do Yoga classes, I quit because I was starting to get embarrassed.  I couldn't look down because I would get sharp pains all the way to my feet.  But that wasn't the worst part.  I couldn't hold basic poses.  I would lose my balance.  If I didn't fall my legs would shake.  Bounce up and down, almost like a tremor.  up and down up and down up and down rapidly.  I thought maybe I was just really out of shape or that it was related to my back problems but looking back........

I wonder if these things are worth mentioning to my doctor. 

*note to self* Stay of google.  nono     

 


tootles*
New Member


Date Joined Oct 2008
Total Posts : 6
   Posted 10/23/2008 1:53 PM (GMT -7)   
My MRI came back normal!!!! YAY!

The doctor said she could send me to a neurologist if I would like. I said no thanks, I'm taking the wait and see approach. I'm symtom free right now, the numbness has subsided and I don't want to go through all of the same things I went through 10 years ago. Hopefully it will be another 10 years of no symptoms.

This will be my last post. Thanks for giving me a place to post my thoughts. It's great.

My thoughts and prayers are will all of you.

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 10/23/2008 3:27 PM (GMT -7)   
WOOOHOOOOO TOOTLES!!!!! Great news!!! I wish u NO MORE symptoms EVER!!!! Please do let us know how u'r doing and if u need us for anything just say the word friend!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*

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