hi im new and newly diagnosed.

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pam1201
Regular Member


Date Joined Sep 2009
Total Posts : 21
   Posted 9/3/2009 12:36 PM (GMT -6)   
hi, im pam and i was just diagnosed, they found it with an mri and i had been diagnosed with fibromyalgia since 2003. they want to do a spinal tap and im terrified to do it, ive heard lots of hooro stories about getting headaches for days from them.ive been putting it off because of it, is a spinal tap that important?

Denjski
Regular Member


Date Joined Aug 2008
Total Posts : 105
   Posted 9/3/2009 5:19 PM (GMT -6)   
not really....if they can see the lesions with the MRI. its usually not done.
It seemed like a good idea at the time


pam1201
Regular Member


Date Joined Sep 2009
Total Posts : 21
   Posted 9/3/2009 8:03 PM (GMT -6)   
they found lesions on my brain mri.
Always Blessings*Never Losses


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3518
   Posted 9/3/2009 8:46 PM (GMT -6)   
If you have a diagnosis, then the lumbar puncture seems sort of not necessary. 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


pam1201
Regular Member


Date Joined Sep 2009
Total Posts : 21
   Posted 9/3/2009 9:56 PM (GMT -6)   
well that is what i was thinking, they found several lesions on my brain and when i asked him what the diagnosis was he said he "felt" it was ms but he till wanted me to do the lumbar punture and also since i refused the mri contrast he wanted me to get it with contrast but i refused because im allerigic
Always Blessings*Never Losses


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3518
   Posted 9/3/2009 10:33 PM (GMT -6)   
Ah it sounds like you have "probable MS".  Your doctor is trying to exclude all other causes of the lesions that showed up on your brain.  Lesions can be caused by many things.  You can certainly refuse the lumbar puncture, but you may not get a definite diagnosis.  You may end up waiting to see if things get worse.  Most likely, you won't get MS treatment without a definite diagnosis. 
 
You might try asking for a less invasive test like evoked potentials.  That was as telling for my diagnosis as the lumbar puncture was. Are you seeing an MS specialist?  You can always take your MRI and get a second opinion.  Has your doctor discussed treatment options yet?
 
It is a shame you are allergic to the contrast dye.  That dye can really indicate if the lesion is an MS or demyelinating lesion.  It can rule out things like benign tumors or small strokes.  Once you have a solid diagnosis then the dye is no longer necessary.  I had the dye diagnostically, but I don't have to have it anymore. 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


PrayerWorks
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 9/8/2009 1:18 AM (GMT -6)   
If you are not comfortable about a Lumbar puncture right now I would ask about having evoked potentials done.  Just as Gretchen stated, it can show the disease.  I've been diagnosed since 10/2008 and I have not had a lumbar puncture.
 
If your dr still insists on a lumbar puncture I would suggest that you gather as much information as you can: Who would do the procedure, where would it be done, what are the procedures of this test, are there options for you as far as twilight sleep or anxiety meds to help soothe your nerves, try and find out if anyone else has had it done there and get in touch with them.  The best answers can come from the patients that have experienced this test.
 
Remember, you can always get a second opinion. 
 
Keep in touch and let us know how you are doing!
 
PrayerWorks

Pray without ceasing. In every thing give thanks: for this is the will of God in Christ Jesus concerning you. 1 Thessalonians 4:17,18
 
Just started Copaxone 06/2009
Monthly IV Solumedrol since 03/2009
Diagnosed RRMS October 2008
ACDF C6/C7 May 2008
ACDF C5/C6 May 2005
 
 


pam1201
Regular Member


Date Joined Sep 2009
Total Posts : 21
   Posted 9/8/2009 4:34 PM (GMT -6)   
i see my neuro on the 15th, im gonna ask for an ept first. then ill decide on the lumbar test:}
Always Blessings*Never Losses


sandfly
Regular Member


Date Joined Sep 2009
Total Posts : 27
   Posted 9/19/2009 1:52 PM (GMT -6)   
Hi Pam and sorry about the diagnosis.  But my docotr started with an MRI and excluded the lumbar puncture because he said it was too invasive and the MRI showed without a doubt that I did have ms. So I would probably not have it done myself. I have witnessed a few who did have it and the headaches and pain did seem intolerable, I would never go through that myself.  Good luck with the ms, hope they can find a drug that might help you.
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