New and wondering what's going on with me

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Shashi
Regular Member


Date Joined Jul 2006
Total Posts : 156
   Posted 7/22/2006 2:13 PM (GMT -6)   
Hi all,
 
I'm new to this site.  I used to be on the BrainTalk site until it went down, so it's nice to find some familiar names and friendly folks here.
 
I posted as a response to another thread last night, but thought I should introduce myself.  My name is Lisa, I'm 45-years-old, newly married (going on 5 months now), and an assistant professor at a community college where I teach medical terminology, medical transcription, and Microsoft Office classes. 
 
I started having some really weird symptoms about 6 weeks ago, which were actually just a new chapter in an ongoing list of strange symptoms.  Below is the symptom list I created (had to do that so I wouldn't forget anything.)  I'm sorry it's so long, but you know how it is.
 

Two or more years ago:

 

  • Restless leg syndrome
    • Has occurred off and on for several years
    • Feels like my legs muscles are twitching and like I need to kick them
  • Headaches
    • Onset 10 years ago after auto accident
    • Stabbing horrendous pain in lower left occipital lobe
    • Frequency has increased from once every three to four months to every couple of weeks
    • Duration has increased to several hours/days in length
    • Dent in the base of my skull which is increasing in size.
  • Numbness and tingling in extremities
    • Several years duration, especially in arms and hands
  • Decrease in sense of smell and taste
  • Fatigue during the summer especially and often after a hot shower or bath

 April 2005:

 

  • Numb chin and lip
    • Lip and chin on bottom right side tingling and numb, nerves feel hypersensitive
    • Right side of my tongue has started going numb as well within the past few weeks
  • Cognitive problems
    • Forgetfulness
    • Frequently can’t remember common words, it’ll be on the tip of my tongue, but I can’t say it
    • Sometimes substitute the wrong word totally
    • Lack of concentration and ability to understand concepts I once could master with no problems
  • Increased urination and decreased bladder control (urge and stress incontinence)
  • Alternating constipation and diarrhea, no matter what I eat    
  • Vision
    • Large black spot in the center of my vision of both eyes when I’m in a dimly lit room
    •  Blurriness in both eyes, especially after being over heated
  • Dizziness and vertigo
  • Spasms in my throat when trying to speak or read

 November 2005:

 

  • Intense burning sensation in my upper right thigh
    • This sensation lasted for several days and has returned several times since, lasting a few days each time

May 2006:

 

  • Muscle tremors
    •  Faint tremor in hands and arms and other muscles of body and face, almost like a constant vibration
    • Often causes my head to nod in a “yes” motion
    • Occurs when I’m resting or sometimes when I’m writing or trying to eat
    • Makes it difficult to sleep when my entire body is shaking    
  • Slurred speech
    • Husband noticed recently that I don’t articulate clearly like I did previously
    • Mouth and tongue often feel thick and clumsy
    • Often can’t pronounce words correctly, like my tongue gets tangled up or I run words together
  • Extreme fatigue
    • Muscles in arms and legs feel that they have no strength, very weak, often too heavy to move
    • Difficult to move arms and legs at times
    • Fatigue is worse in hot weather or if I take a hot shower or bath (Noticed this last year in April)
    • Increasing muscle weakness – having difficulty picking up a gallon of milk, walking up stairs, opening doors
    • Even normal activities, such as cleaning house, working, shopping, having relations with my husband, etc., cause extreme fatigue which can last for days
  • Muscle spasms
    • Painful muscle spasms (Charlie horse sensations) in my legs, arms, shoulders, back, and sometimes face
  • Vision
    • Flashing lights, especially in my peripheral vision
    • Notice a “jumpiness” in vision, like my eyes are jittery, difficulty focusing on anything       
  • Tinnitus
  • Anhidrosis
    • I just noticed this summer that I do not sweat at all, not even in the most intense heat

 July 2006:

 

  • Numbness and tingling
    • Recently having numbness and tingling in both feet and legs (in addition to arms and hands) and often in my face on one side or the other
  • General malaise
    • Just generally feel ill and uncharacteristically exhausted and fatigued.

 Okay, if you made it through that list, here's the rest of the story.  :-)

 

I had a consultation with a neurologist several weeks ago, and during the neuro exam, the doctor noted lateral nystagmus, dysarthria, slow reflex response in my ankles, and a present Babinski reflex in my left foot.  The doctor strongly suspected MS from these findings and from my symptoms and sent me for testing.
 
I had the usual blood tests ruling out RA, B12 deficiency, Lyme disease, diabetes, etc.  I had three evoked potential tests (visual, auditory, and somatosensory), and a brain (not spinal) MRI to try to diagnose whatever is going on with me.  Everything except one of the sensory evoked potentials tests came back normal.  (Oh, and it was noted that I also had primary "empty sella syndrome", which is a benign condition which doesn't normally cause any symptoms.)
 
Interestingly enough, when the results came back from all of these tests, the neurologist had the nurse call me and tell me that everything was normal, I didn't have MS, there was nothing else he could do, and I didn't need to see him again. End of conversation.  No mention as to any follow-up for my symptoms (even though I asked and told the nurse that the symptoms were getting worse), no mention of the abnormal evoked potential in my left leg (I had gotten a copy of all the reports earlier, or I wouldn't have known about the delayed signal to my left foot) or present Babinski reflex or what they might mean, no help at all.
 
I now have an appointment with a second neurologist who was recommended on a list on the BrainTalk boards August 9.  I hope she can help me because this whole ordeal and the problems I am having are seriously interferring with my work and with my personal life.  (My husband thinks I'm crazy since the neurologist didn't find anything wrong, and that it's all in my head!)
 
Anyway, thanks for hanging in there until the end of this long post.  I'm sure I will have questions for you all as time goes on.
 
Big hugs,
 
Lisa

Shashi
Regular Member


Date Joined Jul 2006
Total Posts : 156
   Posted 7/22/2006 2:22 PM (GMT -6)   
Oh, now see what this darn forgetfulness does!!  I just reread my post and noticed that I said I was 45 years old.  I am NOT!!!  I'm only  43 years old!  SHEEESHHH!!!  eyes

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 7/22/2006 4:49 PM (GMT -6)   
Hey Again Lisa!

I think we 'met' last night on my thread. So good to see u posting u'r history. I think we both realized in my thread that we are pretty much in the same boat. I can see u'v done a good job documenting u'r symptoms and that's great! Keep doing that and present to each and every doc u see. I would offer some advice borrowed from another member...one doc is best if u can finally find one who works for u. U'r pcp sounds like a good central doc to hold onto and work from him/her with u'r other specialists as needed. I hope u'r upcoming appt with the new neuro goes well and u can finally find some answers. Are u getting any symptom relief?? That's been my saving grace. I'm on cymbalta for the majority of these symptoms and klonopin for the jerking. I can tell u the cymbalta works great, but i've only used the klonopin twice tho each time seems to have helped. Best wishes and all my prayers to u as u search for answers. Please let us know how u'r appt goes and how u'r doing.

rhonda

BGD2Me
Regular Member


Date Joined Apr 2006
Total Posts : 366
   Posted 7/23/2006 9:28 AM (GMT -6)   
Wow! Very interesting, because when Lysha's first major attack happened earlier this year it was highlighted with her taking Biaxin for an inner ear infection and everything getting dramatically worse. Lyme was eliminated early with a negative test, but maybe this could help figure things out.
We are definitely going to follow up on this!

Thanks for the tidbit of information violet

Justin
When everything's coming your way, you're in the wrong lane.


Shashi
Regular Member


Date Joined Jul 2006
Total Posts : 156
   Posted 7/23/2006 10:02 AM (GMT -6)   

Thanks for the replies, everyone. 

Rhonda, the neurologist prescribed some Zanaflex for me for the muscle spasms, but I'm not taking anything else for the other symptoms at this time.

Violets, I've been on several different antibiotics over the last few months with no results at all.  In fact, I'm on a round of Penicillin now for an abcessed tooth and haven't noticed a change in my symptoms at all, either for the good or the bad.  But it's always worth a try. Thanks!


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