Re: [TMIC] Not Devic's (MS)- then what???

Wed, 20 Sep 2006 09:06:53 -0700

I have the same question: is the increase pressure part of my active disease cycle?  It makes sense, but I did not realize that the increased pressure could bother my vision after a while.  My Dr. keeps asking me "how's your vision"...




Bev
From: "Sandy Heidel" <[EMAIL PROTECTED]>
To: "Butcher, Bernie [S&FS]" <[EMAIL PROTECTED]>, "Beverly Barr" <[EMAIL PROTECTED]>, <tmic-list@eskimo.com>, <[EMAIL PROTECTED]>
Subject: Re: [TMIC] Not Devic's (MS)- then what???
Date: Wed, 20 Sep 2006 10:33:43 -0500

My last tap showed increased pressure. My neuro called it Pseudo Tumor Cerebri and said, "Well now we have something else to add to your list of rare neurological disorders." I said, " I am not looking to expand the list."
He loves the diagnosis part of his job.  I try to prevent him from using those skills any more than he has to.
 
  But it can evidently cause blindness and so I have to have my eyes checked for damage from the increased pressure on the retina.  It can also cause headaches but I cant say that thats my case. I have migraines that come and go but they were here before the TM or the PTC.
 
I am wondering now if an increase in pressure is part of the active disease cycle and if its common to TM or MSers when a tap is done during an attack? 
Sandy
 
 
 
----- Original Message -----
Sent: Wednesday, September 20, 2006 10:19 AM
Subject: RE: [TMIC] Not Devic's (MS)- then what???

They thought I had Hydrocephalus - too much fluid (?) - they had me on my feet 15 minutes after the spinal tap (they took 50cc) no improvement in my walking
 
BERNARD BUTCHER
 

From: Beverly Barr [mailto:[EMAIL PROTECTED]
Sent: Wednesday, September 20, 2006 10:48 AM
To: Butcher, Bernie [S&FS]; tmic-list@eskimo.com; [EMAIL PROTECTED]
Subject: RE: [TMIC] Not Devic's (MS)- then what???

Same here; inflammation and my fluid pressure was high (but I'm not sure what that means). 




Bev
From: "Butcher, Bernie [S&FS]" <[EMAIL PROTECTED]>
To: "Beverly Barr" <[EMAIL PROTECTED]>, <tmic-list@eskimo.com>, <[EMAIL PROTECTED]>
Subject: RE: [TMIC] Not Devic's (MS)- then what???
Date: Wed, 20 Sep 2006 08:04:49 -0400

The only thing they found from my spinal tap was evidence of inflammation (?)
 
BERNARD BUTCHER
 

From: Beverly Barr [mailto:[EMAIL PROTECTED]
Sent: Tuesday, September 19, 2006 6:52 PM
To: tmic-list@eskimo.com; [EMAIL PROTECTED]
Subject: [TMIC] Not Devic's (MS)- then what???

Last week I had the spinal tap and today I found out that the results were negative.  Negative for MS I'm guessing.  I have to wait until next week Tuesday in order to have a visit and sit down with my Dr.  What does this all mean?  That I most likely have Devic's and definately not MS?  I need some answers so that I do not get overly weighed downed...

I went to Cancun with my sister a two weeks ago.  I left children and husband behind...I really needed to mope and think.  My sister has Lupus and she was quite helpful on what to do when you are exhausted, tired or just not in the right frame of mind.  While I was there, I believe I was very much affected by the hot weather.  I was sick for two days, back, neck pain and I even spiked a fever overnight and woke up with a fever blister on my lip.  I had no appetite and I was a just wanting to sleep.  I took some of my sister's 600mg ibuprofen for comfort.  I typically, love and enjoy the warm weather.  I love the feel of the sun on me and I just was a little disturbed that i did not feel well and was so drained on my vacation.

Does the warm weather affect persons with Devic's in this mannter?? 

 

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I just received a call from my dr. that my antibody test from the Mayo Clinic was negative for Devic's disease.  He previously ruled out MS based on my MRI scans, what then is plaguing me? It is possible to have Devic and have a negative testing for the particular antibody?




Bev
From: [EMAIL PROTECTED]
To: [EMAIL PROTECTED], tmic-list@eskimo.com
Subject: Re: [TMIC] subscribe
Date: Thu, 31 Aug 2006 23:02:30 EDT

You can correspond with all of the group by just writing using the original address that you used that I replied to.  In case you do not still have it, the address is listed above along with yours.
 
Ann in Virginia



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