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Kellie L

First Timer-January 6th

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Hi All,

 

Excited to be starting the Whole 30 AIP January 6th.  I am a 34 year old RN from Wisconsin and have been struggling with a host a vague complaints for the last several years.  I was officially labeled "probable MS" this summer after showing multiple brain lesions on my MRI which fueled in depth research, reading, stressing and mass information overload.  I've read Wheat Belly, Minding my Mitochondria and the MS Diet for Women which all share a general theme (diet matters, eliminate wheat and processed foods) but vary in the specifics.  As a result, I have made significant dietary changes since September 2013 but am having a hard time choosing a specific program to follow (which makes establishing boundries impossible) and lack the knowledge/patience/understanding to formulate my own at this time.  The Whole 30 is appealing because of the support and clear outline provided as well as the short time frame to start.  I need to meet a goal to fuel my success and think this is just what I need:)

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Hi All,

 

Excited to be starting the Whole 30 AIP January 6th.  I am a 34 year old RN from Wisconsin and have been struggling with a host a vague complaints for the last several years.  I was officially labeled "probable MS" this summer after showing multiple brain lesions on my MRI which fueled in depth research, reading, stressing and mass information overload.  I've read Wheat Belly, Minding my Mitochondria and the MS Diet for Women which all share a general theme (diet matters, eliminate wheat and processed foods) but vary in the specifics.  As a result, I have made significant dietary changes since September 2013 but am having a hard time choosing a specific program to follow (which makes establishing boundries impossible) and lack the knowledge/patience/understanding to formulate my own at this time.  The Whole 30 is appealing because of the support and clear outline provided as well as the short time frame to start.  I need to meet a goal to fuel my success and think this is just what I need:)

What's happened since the probable MS diagnosis?  Any further tests or evidence of whether this is MS or not?

I ask as someone who's been living with MS since being diagnosed 8 years ago. I know it can be tricky to diagnose (as it's a diagnosis of eliminating other things), but you ultimately want to know for sure one way or the other.

Unless you know for sure, I would recommend completing a standard Whole30 first, vs. the AIP version. 

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Call me the "non-compliant" patient.  After meeting with the neuro, I elected to watch MRI changes rather than do a lumbar puncture due to the false negative possibility.  I was due to have the repeat MRI in October but didn't follow through.  I am now not even sure that I need or want to get their "official" diagnosis as it seems like they do nothing but make educated guesses.  The same people who told me two years ago that "You do not have MS." are now telling me that it is most likely MS.  Not to make generalizations, but the things I have seen as a nurse and within my own family is really disheartening and I just don't know that what they can offer me is worthwhile or even helpful.   Overall I am beyond frustrated with the diagnosis process as I had been pushing for an MRI for 3 years before it was finally completed and than to be told "it's probably MS" but not get the official diagnosis pretty much destroyed my trust in conventional medicine.  I have a lesion on the corpus callosum which I understand to be MS specific, but since the diagnosis is made over time, I haven't been on their radar long enough to meet the criteria for the official diagnosis.  All other rule out tests for Lupus, Lymes, etc were negative.  I did have low Vit D levels and am now supplementing.  I am hypothyroid as well.  I'm not sure how I will proceed with the follow up at this point.  I am looking for a Functional Medicine provider to establish with and maybe they can offer some additional insight.  The question I keep asking myself is "What would the official diagnosis do for me?" and I think probably nothing.  I am not sick enough for meds nor do I want to go down that route so... 

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I hear you. It's a very personal decision on how to proceed.

It sounds like they've tested you for the usual suspects.

Out of curiosity, have you also been tested for gluten sensitivity or celiac disease?  Not that that would cause your lesions, I just find that many folks with MS are not good with gluten.

 

For me, I was lucky that I was diagnosed pretty quickly (and didn't need a lumbar puncture). Had 2 attacks over 2 months, and an MRI showing lesions in my brain and spine. I started meds the month after my diagnosis. Had a tricky 1st year with another bad attack a year later.  After my annual MRIs showed me getting new lesions, my neuro suggested changing meds. So I switched from Copaxone to Rebif, and I've been flare-up free with no new lesions since Nov '07. So for me, Rebif has halted any further evolution of my MS, for the time-being. I also believe supplements in areas where I was deficient (Vit D and others), eliminating gluten (dxd as gluten sensitive 10 months after my MS dx), exercise 3-4 times a week, and stress management techniques have helped as well.

I wish you the best in health in where you go from here, and finding a Functional Medicine practitioner you like.

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Thanks Chris, I appreciate the feedback.  I have not gotten tested for celiac or gluten sensitivity but from what I have been reading the past few months most people have some degree of intolerance and almost everyone would benefit from avoidance.  Actually, many people do believe that gluten can cause brain lesions, autoimmune disorders and many many other issues.  It's a vast area of research and pretty startling.  Are you familiar with Dr. Terry Wahl's?  She is an internal medicine doc who has PPMS and an amazing recovery story (actually what got me started on this journey).  Wheat Belly by William Davis is pretty eye opening too.  Best of luck to you as well and I hope you continue to stay stable:)

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Hmm ... interesting stuff.

 

I've only recently heard of Terry Wahls.  When I mentioned the Whole30 and what it's about to a friend last summer (after my successful Whole30), they mentioned they had done the Wahls Protocol. 

 

Thanks for your kind wishes.

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I'm starting my third W30 next Monday to get relief from returning fibromyalgia pain.

 

I, too, have only recently heard of Dr. Terry Wahls. She's an Iowan (local to my area) and I missed an opportunity to hear her speak at an event last month. Her story is astounding and further proof that the Paleo lifestyle can have staggering effects. Dr. Wahls provides a worthy example to look up to, for sure! 

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