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Nikki B
New Member


Date Joined Jul 2006
Total Posts : 1
   Posted 7/12/2006 6:37 PM (GMT -7)   
Good evening to all.  First and foremost, Thank you.  Reading some of your posts has helped me considerably.  My husband has the ostrich syndrome and as wonderful as he is I feel a bit "in it alone."  I have only been Dx'd w/ possible MS, I am currently going out of my mind waiting on test results, i.e. Autonomic Reflex (yep, I passed out), A zillion blood labs, arterial doppler, EVP's, EEG, MRI (cervical), and the Spinal Tap.  My appt. w/ the Neuro is on the 18th, less than a week but seems forever.  Back to point, I fanatically research everything I find out.  My only form of control at the moment.  The MRI brain showed only one lesion, I have the MRI films and have actually studied them until I get a headache!  I have several questions to ask and would appreciate any input.  First of all the "episode" that sent me to the ER was not "classic" MS symptom.  My legs and feet turned freezing cold from the inside out, had numbness & tingling, and turned purple and black.  I went to ER fearing circulation problems, purple/black skin is not usually a good sign.  However, I had good pulses and oxygen levels in my feet and while I was there my hands started doing it to.  Note, both left and right hands/legs exhibited the symptoms at the same time with a slight variance in degree.  The ER doctor admitted me to the Neuro floor believing possible MS.  They the consulted my GP who had me released.  My GP had just did a routine physical the week before that was good (with exception of lipids) but he had put me on Adipex for weight loss and thought maybe it was a reaction.  GP pulled me off of the Adipex and symptoms still came and went, fortunately they would come in the Doc's office, or anytime I seemed to be at rest or sitting still for long periods.  He ordered a few tests, arterial doppler (upper) and arthritis panel, both came back normal - ruled out Renauds and Lupus.  Then refered to Neuro.  Back to questions... Has anyone else experienced that or any of these other strange things, they kind of scare me.  First appt w/ Neuro he said he believes MS but skin color thing is not a normal symptom
  Feeling an muscle tremor similiar to when a tinge(sp?) unit is used, in one specific spot, my left back middle shoulder blade
  Hearing problems - I hear them talking but can't make out what they are saying or hear something totally different
  Generalized back pain
  Severe leg pain expecially in the knees and ankles
  Throat pain, one side  feels swollen
  No vision problems, except "flutterbees" white spots that move around
 
I still have some of the normal symptoms, fatigue, mental lapses, irritability, severe headaches, bladder issues.
 
Sorry for the long post.  Thanks in advance.
Live, Laugh, Love.


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 7/13/2006 3:55 AM (GMT -7)   

Well, your symptoms certainly aren't the "classic MS symptoms" that a neuro looks for. I suspect he's running all those tests to try to rule out other possible causes of your problems.  Have you reported the throat pain to him? That, combined with the hearing problems, might point to some infection in the inner ear. 

I do have the purple fingers and toes thing -- my neuro explained it like this: the blood vessels can go into spasms...contractions...similar to what happens with muscle spasms. When the vessels constrict like that, the blood flow is slowed or stopped altogether, until the spasm relaxes and blood starts to flow again. When it happens, do you experience any pain? Or just the discoloration?

As for MRI's...I think that unless you have specialized medical training and training on how to "read" them, it would be impossible for the ordinary person to discern anything of value from the MRI.  Even the written reports can be confusing, as it often has contradictory language in there.

Yes, the 18th sounds like an eternity...but it also sounds like you've had all the usual tests run, so hopefully the doctor will be able to tell you more precisely what is going on.  Do come back and let us know, OK?

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 7/13/2006 8:58 AM (GMT -7)   
Hey Nikki

Hang in there and the 18th will be here before u know it. I'm in limbo with u and understand u'r frustration in all the funky symptoms and long wait. Know u'r not alone. I pray u will get some answers soon...ms or otherwise. Take good care and be sure to come let us know what the doc says on the 18th. We're here for u.

rhonda

Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 7/13/2006 12:27 PM (GMT -7)   
Hi Nikki,

Try to hang in there. It sounds like your doctor is doing all the right tests to figure things out for you, although I understand how it can be frustrating waiting for the results. My husband, who has MS, sometimes gets that feeling of being in a deep freezer with the numbness and tingling along with it. His feet turn bright red and almost a purple color sometimes, but never black. Your other symptoms are not things that he has experienced. Please do come back and let us know what the doctor tells you and I hope your answers come quickly.

Kimber
 
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shellypoo
Veteran Member


Date Joined Dec 2005
Total Posts : 896
   Posted 7/13/2006 1:15 PM (GMT -7)   
Nikki,
Good luck, take care and let us know what you find out! Tell your hubby he isn't alone, I think most of the spouses on here have felt the same way (mine included)!
Michelle ><>
 Smile, Smile, Smile!


cocoa11
Regular Member


Date Joined Jul 2006
Total Posts : 95
   Posted 7/19/2006 4:12 PM (GMT -7)   
From one Newbie to another

My thoughts are with you, I and many others here would know exactly how you feel.
Let us know how you go. I won't know myself for absolute sure until the 27th, hang in there!

cocoa11
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