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momofltlbrat
Regular Member


Date Joined Apr 2007
Total Posts : 164
   Posted 1/24/2008 12:10 PM (GMT -6)   
Hi all,
 
Figured an update was in order.  The MRI I had on Monday was clear, no ON, no changes.  Yeah!!!!!  Still don't know why I have had the pain behind my eye, and this weekend playing UNO with ltlbrat I was confused about the blue and green colored cards unless I had both side by side.  Whatever.  Don't get me wrong, I am glad its not ON, but it's one of those I know I have pain, and without "proof" I don't know if I am believed.
 
Another strange thing happening this week -- I am getting back the hives, swelling, joint pain, low grade fever that I started my journey with in 1988.  I was put through the gambet(sp) of tests from blood, allergy, skin and anything else they could think of.  Once everything was ruled out they said seronegative lupus(not in the blood), a doctor in 1991 changed it to fibro, and from my MRI's, changed to MS in 2006 and my current neuro feels it may have been MS all along.  Noone change explain the hives, I just get scripts for two antihistamines and tagament.  UGGGGGGGGH
 
Anybody else out there ever have chronic hives, they actually go to huge welts and my skin goes from pink to purple?  Any thoughts.
 
Thanks for letting me get that out.
 
Debbie

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/24/2008 1:03 PM (GMT -6)   
momofltlbrat said...
Hi all,
 
Figured an update was in order.  The MRI I had on Monday was clear, no ON, no changes.  Yeah!!!!!  Still don't know why I have had the pain behind my eye, and this weekend playing UNO with ltlbrat I was confused about the blue and green colored cards unless I had both side by side.  Whatever.  Don't get me wrong, I am glad its not ON, but it's one of those I know I have pain, and without "proof" I don't know if I am believed.
 
Another strange thing happening this week -- I am getting back the hives, swelling, joint pain, low grade fever that I started my journey with in 1988.  I was put through the gambet(sp) of tests from blood, allergy, skin and anything else they could think of.  Once everything was ruled out they said seronegative lupus(not in the blood), a doctor in 1991 changed it to fibro, and from my MRI's, changed to MS in 2006 and my current neuro feels it may have been MS all along.  Noone change explain the hives, I just get scripts for two antihistamines and tagament.  UGGGGGGGGH
 
Anybody else out there ever have chronic hives, they actually go to huge welts and my skin goes from pink to purple?  Any thoughts.
 
Thanks for letting me get that out.
 
Debbie
I don't think any of those things -- hives, swelling, joint pain, low grade fever have anything to do with MS!  Presumably you told your doctor about undergoing all those tests in 1988, and they've been repeated since then?  I don't want to get into a controversy here with another forum, but do you know if you were tested for Lyme disease? It wasn't all that common..or at least not commonly known about..in 1988..and untreated long-term Lyme disease could explain your symptoms now.
 
You say your current neuro feels it may have been MS all along. Does she still say that, given your recent "clear" MRI?  And you might have been following the discussion here about migraines (Rhonda has them)...the pain behind your eye and distorted color vision could be a migraine (but that wouldn't explain your other symptoms..)
 
Have you had a spinal tap?  Your symptoms suggest there might be an infection hanging around somewhere inside..and a spinal tap might demonstrate that.
 
I hope y ou get some answers soon.
...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 1/24/2008 1:32 PM (GMT -6)   
Hey Debbie

WOOHOOOO!!!! This is great news!! I know, there are still probs to deal with and figure out, but this is a victory!! Thanks for the update and hang in there friend...u'll get thru this!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


momofltlbrat
Regular Member


Date Joined Apr 2007
Total Posts : 164
   Posted 1/24/2008 2:05 PM (GMT -6)   
Uppitycats, I may have been unclear, I'm sorry.  Was trying to post my history and I guess it got confusing.  I did start with all the symptoms listed in 1988, was tested several times then and since then for lyme disease, let alone retested 3 times a year for lupus.
 
Also, I didn't mean the MRI was clear again.  It is clear for ON, and I have no further changes since being dxd in 2006.  I guess this may be thanks to copaxone.
 
I know the hives, swelling and joint aches probably aren't MS, but wonder if I have more going on than fibro and MS.  Cant someone with MS have more than one autoimmune disease.  I need to follow up with my PCP and I'll suggest redoing a lyme test.
 
Rhonda, the neuro never calls herself, it is always through her secretary, so I don't get to ask what now.  I am glad it is not ON, but like I said it does hurt.  Luckily my follow up with her in the middle of February.  The secretary suggest I follow up with my PCP about the hives.
 
Debbie

Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 1/24/2008 2:14 PM (GMT -6)   

Hi Debbie,

 

 I’m so glad to hear you don’t have ON! Your symptoms sound pretty unpleasant though, and I hope your doctors will continue looking into this for you. Have you had your eyes examined by an ophthalmologist since the eye problem began, or been evaluated for migraines? I hope you get some relief from all this soon!

 

Sunny


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/24/2008 3:46 PM (GMT -6)   
momofltlbrat said...
Uppitycats, I may have been unclear, I'm sorry.  Was trying to post my history and I guess it got confusing.  I did start with all the symptoms listed in 1988, was tested several times then and since then for lyme disease, let alone retested 3 times a year for lupus.
 
Also, I didn't mean the MRI was clear again.  It is clear for ON, and I have no further changes since being dxd in 2006.  I guess this may be thanks to copaxone.
 
I know the hives, swelling and joint aches probably aren't MS, but wonder if I have more going on than fibro and MS.  Cant someone with MS have more than one autoimmune disease.  I need to follow up with my PCP and I'll suggest redoing a lyme test.
 
Rhonda, the neuro never calls herself, it is always through her secretary, so I don't get to ask what now.  I am glad it is not ON, but like I said it does hurt.  Luckily my follow up with her in the middle of February.  The secretary suggest I follow up with my PCP about the hives.
 
Debbie
Hey, I have MS...and a common problem is brain fog..let's blame that, shall we??  :-)   I'm glad the MRI was clear for ON. (But I also wonder about why an MRI to test for ON, when it can be checked for and seen by an opthamologist, without any sort of fancy testing, right in his office??)  But it really is good that you don't have any further changes otherwise; Yay Copaxone!!
 
Yes, someone with MS can have more than one disease going on, including more than one autoimmune disease.  I wonder if what is ailing you though IS an "autoimmune disease", and isn't some sort of infection somewhere... 
 
I do think it's a good idea to go back to your primary and say something like.."ENOUGH, already!! We need to get to the BOTTOM Of this!!!!"
 
Impatient, aren't I?? :-)
...I am not a doctor, nor health professional, and don't pretend to be one, here.....

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