spinal fluid and blood normal, but have lesions

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healthvitalitygirl71
New Member


Date Joined May 2010
Total Posts : 8
   Posted 5/10/2010 3:54 PM (GMT -7)   
Hi
 
I just posted a bit ago about my history, symptoms and a bunch of questions. I just found out that my spinal fluid/blood match was normal. Hooray!!!!!!!! What should I do next? Is there some sort of protocol or can I put the idea of having MS to rest? Can I move on safely? All advice welcomed.
 
I reposted my earlier post below, in case you care to comment. Warning: it's long!
---------------------------
Hi! I'm new to this site. I've been reading page after page on this forum and decided I needed to join and post as well. I have way too many questions, and a doctor that is not responsive, to keep this all to myself any longer.
 
I'm a 39 y.o. female with a history of migraines. While driving to work one day (thankfully, while stuck in traffic) I felt this wave take over my body. I felt like I would black out, but didn't. I proceeded on to work until everyone started commenting on how red my whole face was---and I was developing a pretty bad headache simultaneously. I went home, then to Urgent Care and then off to the ER by their suggestion. I had a CT scan without contrast that was normal. They sent me home saying it had to do with my history of migraines and suggested I follow up with a Neuro. I did. He did an MRI and I have six (I think, I cannot get a straight answer) small (avg: 2mm) foci on my brain. For the normal person that news is devastating, for me it was life altering. I have not been able to think straight for weeks now, I have done a ton of crying and I have a seemingly heartless Doctor. In the meantime, I have been going through numerous tests: evoked potential (checkerboard on screen version) - normal; bloodwork (looking for Lupus and RA) - normal, and EEG with sleep deprivation - normal. Ten days ago I had a lumbar puncture and am awaiting those results....and freaking over it.
 
Here are my symptoms/conditions:
  • headaches regularly since forever
  • pessimist since forever (working on it though with help of therapist)
  • migraines since 89
  • fibromyalgia since 99 (very, very mild - barely notice it, but Dr. thinks it was brought on my car accident in 97)
  • anxiety since about 99 (tried Celexa - no success and Lexapro - hated it and weened myself off)
  • tingles in left hand, and sometimes right, since 99. Have very sensitive funny bone which is what I thought was the cause.
  • GERD since 01 (take Protonix, but I still always feel like a cottonball is stuck in the right of my throat)
  • rash took over my body for a month in 07 that was controlled with prednisone
  • Multiple foci of hyperintense T2 and FLAIR signal within periventricular and subcortical white matter, nonspecific in nature, possibly representing demyelinating diease, small vessel ischemia or gliosis. No sites of pathologic contrast enhancement. Age appropriate brain vol. without evidence of masses, mass effect or midline shift. No acute intracranial hemmorage or abnormal extra-axial fluid collections.
  • hands and feet always cold, more pronounced lately
  • occasionally over the years get dizzy spell that lasts a second and goes away
  • resting pulse avg 95. move at all on my feet and goes up to 115 ---this is since June (full cardiac workup shows nothing)
  • heart palpitations for as long as I can recall, but with more frequency since June
  • steady weight gain over the last year (though lost 10 lbs during lumbar puncture and torment that ensued)
  • in morning, hands are full feeling and weak
  • left forefinger trembled for about 1 week in certain positions about 5 months ago
  • get occassional tingly/bug feeling in small patch in middle left of back - only happened a handful of times over time
  • find myself staring at things since 95, but it is getting more pronounced
  • funny feeling/dizzy when I get off elevators (even short rides) for forever
  • for two months I had to nap every night after work, even with 8 hours sleep. Still, I wake up exhausted, even with 8 hrs.
  • felt like bugs were running around on my scalp in small area intermittently for a few days while waiting for blood results
  • had lumbar puncture on 30 April and got the headache that lasted 6 days, on 3rd day I developed a low grade fever (99-99.9) that I've had ever since (my normal temp always seems to be 97.4).
  • had this foggy sort of unplugged feeling in between going in for other exams--lasted a few days. I didn't feel "right" or like myself at all, but it is really hard to define.
  • pins and needles feeling in part of my left leg and foot intermittently over the course of this month or so, sometimes pronounced.
 Here are my questions:
  • Could some of the symptoms above be attributable to anxiety (pins/needles, bugs feeling, foggy, palps, numb tongue/face)?
  • Have you ever caught yourself staring at something for a long time for no reason?
  • Does this wreak of MS? Should I just resign myself to the fact that I have this?
  • Can the lumbar puncture tell you definitely if you have MS or not?
  • What would be a likely next step in my dx if the LP comes back normal?
  • Did any of you have an MRI report like mine and get dx with MS?

I am wrought with anxiety....worse than ever, I'm considering ending a long term relationship, and my job could be ending soon too. I'm so incredibly scared. I feel alone and full of despair. Can you recommend any books or websites that could be helpful? Thanks in advance for any and all responses.

Post Edited (healthvitalitygirl71) : 5/10/2010 4:58:20 PM (GMT-6)


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3546
   Posted 5/10/2010 4:22 PM (GMT -7)   
Hi there,
 
You do have a very long post!  You might delete the other post if you get a chance.  That way the server isn't all tied up with a post that is a duplicate. 
 
Ok to attempt to answer your many questions!  ;)
 
Yes; anxiety can cause many many of your symptoms.  You are right on with the ones you mentioned; those are all things that can be caused by anxiety.
 
Yes, I have caught myself staring at things....I call it slipping into la la land.  I think people tend to do this when overwhelmed ...but just my guess.
 
Nothing reeks of MS.  MS shares so many symptoms with other diseases.  MS is really hard to diagnose!  You certainly do have some MS symptoms but many people do that end up not having MS. 
 
about 90 percent of people with MS show the oligoclonal bands that indicate MS.  So you could still have MS but it seems like very good news that you don't have the O-bands. 
 
Did anyone tell you that migraines can cause lesions?  If they didn't, they should have!  Google that. 
 
I loved your honesty.  I cracked up about your pessimism.  I am glad you are trying to work on that!  Good for you!  You are always welcome to post your questions here.  I am glad you did.  We have other "limo-landers" here.  Best of luck to you!  Keep us posted.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


healthvitalitygirl71
New Member


Date Joined May 2010
Total Posts : 8
   Posted 5/10/2010 4:49 PM (GMT -7)   
Gretchen, thank you for writing. What you said was helpful. Not thrilled with the answer on o-bands, but I am going to try and be OPTIMISTIC that my results are real :-). My Neuro did say that it can be attributable to migraines and brain trauma. My migraines are really not that severe anymore - not for the last 10 years, so I'm not sure how likely that is, or if it is even correlated to that. I will google as you suggested. I've become a master at self diagnosis via the internet (a blessing or a curse, I still have not decided). Please enlighten me, what is a Limo Lander? I've never heard this before. Thanks again.

I will also say to all those who care to listen, after reading so much and observing page after page after page of posts, I'm in awe of everyone's good attitude on this site. It has motivated me to change my life. And now MS is my new charitable cause as well. I hope and I pray that a cure is on the horizon...

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3546
   Posted 5/11/2010 4:25 PM (GMT -7)   
Oops sorry to confuse!  Limbo lander.  I person in limbo is a person without answers or a diagnosis.  It is a person who is frustrated because they are not healthy and they don't have a diagnosis or treatment.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


healthvitalitygirl71
New Member


Date Joined May 2010
Total Posts : 8
   Posted 5/11/2010 7:55 PM (GMT -7)   
I get it now. I can relate.
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