So frustrated with Dr's I could spit

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Katydid11
New Member


Date Joined Nov 2009
Total Posts : 2
   Posted 11/25/2009 8:18 PM (GMT -6)   
Hello all,
 
This is my first post, and I'm hoping to gather your wisdom.
 
I've got a bunch of very weird neurological symptoms. Have had since my 20's, but have ignored them until now (now in 50's).  They come and go, but have gotten significantly worse over the last year or so (off and on).
 
What's frustrating me is the slowwww way my neurologist is approaching this.  It's been 2 months and still no diagnosis.  I'm starting to get highly impatient with this.   I've had an MRI done of my brain (but not spine).  There were two white spots.  Blood tests fine.  She did a neurological exam. 
And now wants to send me for psychoneurological testing.  It's going to take a month to get in!  She thinks it's head injury.  I don't.  That wouldn't come and go, and probably wouldn't be getting much worse 7 years after the injury occured.  Should I be insisting on a spinal tap now rather than later?  (ugh!) 
 
Your advice, please.
 
FYI... symptoms... some sound like MS, some don't.  Or maybe they do, and just don't appear on the "most likely symptom" lists.  (your opinion appreciated)
 
Sometimes hard to breathe (like my lung muscles were exhausted).  Horrible migraines that sometimes last days, charlie horses in left leg & foot, extremely stiff neck, blurry vision (left eye focuses in and out), hard to think like there's cotton stuffed in my head, mean to say one thing but something else completely comes out of my mouth, it's been reported I've said some wacky things but I sure don't remember them, blackouts and losing time, short term memory loss and some really bad judgement, not knowing where I am for a few seconds, alternating constipation and diarrhea, a feeling like ants crawling on me, incontinence, stiff painful neck, clumsy bumping into things and sometimes falling, and completely and utterly exhausted.      
 
Does anybody have any ideas for me?  Is it usual for Dr's to do tests one at a time, until they reach a conclusion?  Should I be more proactive in asking for certain tests?  Is a psychoneurological exam usual during this process?  Thanks, everybody...
 

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3518
   Posted 11/27/2009 9:44 AM (GMT -6)   
I am sorry you are so frustrated.  First know that many spend years looking for a diagnosis.  MS is very hard to diagnose.  White spots can be caused by many many things.  Doctors do not want to make mistakes.  The current FDA treatments for MS are very expensive injections.  Doctors just can't try MS as a diagnosis and see how it goes. 
 
You may want to ask for evoked potentials.  It is far less invasive than that (ugh..and boy do I agree there) spinal tap.  What they do with evoked potentials is hook you up to electrodes (on your scalp...completely painless) and then they see what your response times are to various stimulations.  Most people have hearing, vision and extremeties.  I had vision (abnormal), hearing (normal) and lower extremeties (delayed).  Along with the MRI this test was very revealing.  I also had MS typical reflexes and response to the doctor's neurological exam. 
 
Your symptoms of blacking out and losing time are not at all typical for MS.  That may be the reason your doctor is still looking at your head injury.  And again, the problem with MS symptoms is that so many other diseases/ illnesses and health conditions have those very same symptoms. 
 
Good luck.  I truly hope you don't have this disease.  Below is a very good site discussing the diagnostic process for MS.
 
http://www.mult-sclerosis.org/diagnosingms.html
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.

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