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mystery reader
Regular Member

Date Joined Jun 2007
Total Posts : 257
   Posted 6/17/2007 4:12 PM (GMT -6)   
 Hi!  I was diagnosed in late March with MS.  I tied Betaseron for 3 weeks but had to stop due to severe reactions.  I will be starting on Copaxone once it's approved by my insurance. I have three questions?  Should I be taking a multivitamin.  My primary told me to make sure I took one when I was first diagnosed while my neurologist mentioned I should also take calcium with vtitamin d supplement?  My second question is that I am 50 years old.  I have been told that is both good and bad by different individuals regarding the progression of MS.  What is the "truth"?  Finally I have a burning tingling pain on the top of my head along with my other probelms (muscle spacitiy in left leg, MS hug on the left side from rib cage through lower abdomen, and burning, tingling pain in left forearm.  My neuro seemed puzzled by the burning pain but prescribe Neurontin.  Has anyone else exeperienced this?  Thanks!

Forum Moderator

Date Joined Jan 2007
Total Posts : 3571
   Posted 6/17/2007 6:52 PM (GMT -6)   

Dear Mystery Reader,

Welcome to HW.  I am glad you found us.  I am sorry of your diagnosis and poor luck with betaseron.  Hopefully copaxone will work better for you.  I am on copaxone and have found it to be very easy to manage.  As far as the "truth" goes, well there is no one truth.  MS is different for each person and there are very few patterns.  You are newly diagnosed and progression is a scary thing.  Try to take it one day at at time.  As far as supplements go, there is a wide variety of opinions there.  Most feel you should avoid anything that boosts your immune system.  This means vitamin A, C and E should be avoided and can make your MS worse.  Many neurologists feel that vitamin D and especially vitamin D3 is a neurotransmitter and can be helpful. I can't help you with the Neurontin because I have not used it but many here have and they will be along with their input.  Hang in there.  We are here to support you. 

love and prayers, 

diagnosed: MS  July 2006
Life shrinks or expands in proportion to one's courage. 
Anais Nin

Regular Member

Date Joined Nov 2006
Total Posts : 87
   Posted 6/18/2007 8:44 PM (GMT -6)   
I was diagnosed in December 06, a month before I turned 55. I've been told by several doctors that this should work in my favor, that the MS probably won't progress to the point of total disability. I take lyrica which is for nerve pain. I would describe the pain in my feet at times as burning. Maybe the burning in your head is a nerve irritation. Or maybe tic delaroux (not sure of the spelling.) I have that. It causes a sharp pain in my ear sometimes and in my eye at others. I hope the copaxone works for you. I am using Rebif, have been for about six months. The thing about MS is that the symptoms vary with each individual. That's what makes it hard for the researchers.
Rebif 44 mcg x 3; lyrica; ambien

Regular Member

Date Joined Jun 2006
Total Posts : 329
   Posted 6/19/2007 7:47 AM (GMT -6)   
Hi MR -

I am currently taking neurontin for nerve pain and it has been working very well for me. It also has been helping my tremors calm down quite a bit. However, when I overdue it, it doesn't do much. Had an extremely stressful weekend at work (worked 24 hours straight), tremors were horrible, pain was horrible. Then yesterday was walking all over Michigan State University's campus with my daughter for orientation and the tremors and pain started again. Today I could barely get out of bed and get to work, whole body feels like I was beaten with a baseball bat.

My neuro says that I can increase my neurontin for days like this however, I'm taking 300mg 3X's day and I only have the 300mg pills, so I would have to double dose me (600mg) to add a little extra relief. I'm afraid that would put me in a coma, but I may try it tonight to get some type of relief!

I would highly recommend the neurontin, it has worked very well for me for the last 2 months.
I not only use all the brains that I have, but all that I can borrow.
  Author: Woodrow Wilson (1856-1924), 28th U.S. President

mystery reader
Regular Member

Date Joined Jun 2007
Total Posts : 257
   Posted 6/19/2007 2:41 PM (GMT -6)   
Denda, Did it take you awhile to get used to the neurontin?  I started out the first five days just taking 200mg at night.  Now I'm supposed to take an additional 200mg during the day, and after five days another 200 mg.  I'm feeling rather sleepy and a bit out of it today.  Thanks for any information you can give me.  Mystery Reader
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