HELP!! I am loosing my brain...

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Sandy C.
Regular Member


Date Joined Feb 2006
Total Posts : 129
   Posted 4/14/2007 5:14 AM (GMT -6)   
It has been so long since I have been here and active on the forum, but I do check in time to time...un-noticed.
 
But now I am scared, but my life is so good right now, I don't think I should be so scared. I FEEL good, I have almost normal levels of energy, and pain is at a minimal. I think clearer then I have in a long time too. I am very thankful for all my good days, and feel a sense of accomplishment when I can make it through a day and almost, if not totally, forget that I have MS.
 
BUT... I went to my neuro a couple weeks ago with results in hand from an MRI taken last September... MRI was taken at random and I had no complaints at the time it was taken. It showed FOUR active lesions and TEN NEW lesions and an old lesion that has grown to almost 2cm (1cm in one year). WOW. I cried when I read this, but I am grounded in knowing that lesions DO NOT equal disability. I also know how I feel, and I feel good. I have now officially had negative reactions to ALL MS injectable meds... so I am currently not on any. My neuro suggested low dose naltrexone (sp?) or pulse high dose steroids.......... I had an MRI done two days ago to take to UCSF MS clinic for a second opnion, and there was one active lesion.
 
I am not too sure about living without an immune system and the thought of chemo-like therapy this early seems premature. It is what my neuro is leaning towards till the pill form of MS treatment comes out in oct... I am confused and scared about this treatment option. I know MS is about location location location... but eventually these lesions are gonna strike gold, and I fear that more then anything else. Hopefully UCSF will have some inspiring words and treatment options...
Sandy C.
Diagnosed with Multiple Sclerosis September 2003 currently taking Rebif, Cymbalta 60mg PO QD, and Provigil 200mg PO BID.


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 4/14/2007 6:41 AM (GMT -6)   
I'm a little surprised you found a doctor willing to prescribe LDN (low dose naltrexone) as it hasn't been officially scientifically tested, and proven to be effective for MS. But I suppose if indeed you're not able to inject any of the others, it probably won't hurt. And the pulse high dose steroids certainly is an option.

Neither of those will leave you without an immune system, by the way, nor are they considered chemo-like therapy. You might do some research about both methods (there's lots of LDN information on the net, some legitimate, some not), and the steroid treatment is a pretty common one.

Or rather than low-dose naltrexone, is your doctor considering NOVANTRONE, which is entirely different, and which IS a chemo-like drug?
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 4/14/2007 2:47 PM (GMT -6)   
Hey Sandy,

Hang in there! You have every reason to be scared but you also have every reason to stay positive and hopefull. You are doing so well. Good for you. Be proud of yourself. Don't assume the a lesion is going to strike gold. It may not happen.

I am so sorry about those mri results. Don't let that report take away from your good days and your ability to almost forget that you have MS. That alone inspires me. Thank you for that. Your post is a good one. Keep up the good work and stay strong. You have my prayers.

Love,
Gretchen
 
diagnosed: MS  July 2006
Treatment: copaxone, prayer, laughter, and positive thinking


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 4/14/2007 5:57 PM (GMT -6)   
Hey Sandy!

Wow...i'm glad to see u here again and so glad to see u'r doing so well!! I'm really sorry about the lesions and their activity, but as u said, lesions don't equate to disability. Isn't that a wonderful piece of info?!? I hope the new meds u'r looking at will be helpful and u'll get wonderful results. I know it's scary to think about..the future and what could be, but what could be isn't always what WILL be. Keep enjoying u'r sweet life and don't let ms hold u back ever. I hope those 'forgetful' days remain with u. ;)
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 4/14/2007 8:50 PM (GMT -6)   
Hi Sandy,
 
    That's wonderful you are feeling so well!  I'm sorry you are scared about the new lesions, but as you say you feel good and that's a good thing!  I wish you many more "I forget I have MS days".  I hope whatever new treatment method you and your doctor come up with works well for you. 
 
Co-moderator for Multiple Sclerosis
 
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madlou
Regular Member


Date Joined Nov 2006
Total Posts : 87
   Posted 4/16/2007 8:09 AM (GMT -6)   
"till the pill form of MS treatment comes out in oct."  What pill form of MS treatment are you referring to?
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