glad to have found this forum

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glad to have found this forum

Postby mmpetunia » Fri Dec 21, 2012 2:06 pm

Hi,

I'm Meagan. i was dx'd about 15 months ago. the first 14 months were hell but i'm getting to a place where i feel positive about myself and my future. i will always look back on that time as a very traumatic time in my life--more than just MS happened. but i got through it, i got through grad school in spite of it and now i'm ready to live life. i don't believe in the medications. i keep trying, but i just don't. i'm most interested in natural/dietary methods but in the interest of keeping things balanced would like to add in an oral medication soon. i have tried copaxone and failed miserably both times. i am currently flunking out of a vitamin D/copaxone study at UCSF secondary to my treatment noncompliance. BUT i feel GREAT! better than i have since diagnosis.

i still wear out much faster than my friends and at 32, my social life and ability to participate in things other than just working and coming home to rest is limited. very limited. but i'm doing the best i can and trying to keep myself goal-oriented and not quick to be self-depricating when i'm just not up for something. i have a great partner and she has been really supportive in spite of trying to wrap her head around all of this non sense too. it can't be easy.

plans for the future are tenuous. i try not to think too far ahead but instead to focus on the immediate future and try to do something meaningful each day with my time. i think that is the biggest thing i have gotten out of this diagnosis (besides something else to nerd out on with research) is that i am on borrowed time. there will likely come a time in my future where i will be forced to admit that i am not able to do something i really want to. when that time comes i want to meet it with no regrets!

i am coming here mostly to learn about new treatments and new approaches to the disease. i have very few symptoms at this point and the ones that i do have i can live with. so far, i have not had anything that resembles a relapse. i have 12+ lesions in my brain and spinal cord, and with the exception of my presenting symptom of diffuse lhermitte's i had no other major symptoms. it was all subclinical. i feel fortunate to have been diagnosed so quickly and that its "mild MS."

i think that's probably more than enough for an introduction...if you read this whole thing i apologize--i tend to be wordy!
Dx: 9/8/11 RRMS
OMS diet plus lean poultry
Tecfidera as of 8/21/2014
18+ brain lesions and 6 spinal lesions
EDSS 1.5-2
http://mylaceybrain.wordpress.com
mmpetunia
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Location: SF

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Re: glad to have found this forum

Postby jimmylegs » Fri Dec 21, 2012 2:42 pm

this is my nutrition approach if you are interested:
regimens-f22/topic2489.html#p15460

what were you doing for grad school?
jimmylegs
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Re: glad to have found this forum

Postby mmpetunia » Thu Dec 27, 2012 9:18 pm

Hi Jimmy,

Grad school was for occupational therapy--which turned out to be quite serindipitous, given my diagnosis. i have been reading posts on this site for a full day now...as in, i have done little else besides read post after post and article after article. i LOVE how much research is posted here. i am leaning towards antibiotic therapy combined with LDN (as long as the LDN and abx's are not contraindicated) and nutritional/dietary approaches, but still have much to consider before starting any of it. i have been given a tremendous amount of food for thought and i appreciate that. i have no desire to ever take a DMD again. the cost-benefit ratio is just not appropriate for me, not now at least. my doc recommended copaxone at the time of diagnosis. i really gave it a try but the nightly shots, pain, swelling, bruising, and itching don't work for me. i had a reaction to injecting in my arms twice that was, quite frankly a top 5 in terms of pain. not sure if i just injected too deeply or what.

anyways, this board is great and has given me a new direction in my treatment. one that i am actually excited about and invested in, which feels good. :-D
Dx: 9/8/11 RRMS
OMS diet plus lean poultry
Tecfidera as of 8/21/2014
18+ brain lesions and 6 spinal lesions
EDSS 1.5-2
http://mylaceybrain.wordpress.com
mmpetunia
Family Elder
 
Posts: 107
Joined: Fri Dec 21, 2012 1:21 pm
Location: SF

Re: glad to have found this forum

Postby QuicheLorraine » Fri Dec 28, 2012 8:38 am

Hi Meagan, Looking forward to hearing more from you in the future. Nice to meet you.
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QuicheLorraine
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