runningms Posted February 4, 2014 Share Posted February 4, 2014 Hi All! I have a question that I can't find an answer to. But first I will share a little of my background. I had my first episode in 1996. I have had that spot on an MRI ever since, but no further spots or activity. I did have MRIs leading up to the final diagnosis and they were always clear. In 2010 the final showdown I was in full blown symptom mode. I went numb from toes to hip on the left, so I went to the chiropractor and he adjusted me, then my leg went back to normal a few days later. 3 months later same thing happened but this was accompanied by severe fatigue and severe cognitive function decline and the numbness started traveling.The following cat scan and MRI had so many spots, then coupled with my history I was diagnosed with MS. I started Rebif and had a follow up MRI in early 2013 more disease activity. A week of steroids, then a follow up MRI in July showed that those lesions resolved but I had 2 new ones. Next plan of attack change meds to copaxone and a follow up MRI in December which showed a large dangerous lesion but everything else cleared up. I'm on a week of steroids but it's my own fault I didn't take the new medicine perfectly during the holiday. So I will have another MRI in March. I'm also planning to try to go back to the strict whole 30. Here's the kicker I have no symptoms, exercise often, crossfit and run (I'm not talking 15 minute miles more like in the nines when I'm training) my coworker describes me as incredibly high functioning, my neuro calls what I'm having silent exacerbations. Without the MRI we would have never known what was going on because I present on a clinical exam with nothing, nada, zip. My question to maybe more experienced MSers is this: when you report your results do you base those results only on how you feel and what you can do or do you base it on how you feel, what you can do and clear MRI results? I've done 2 successful whole 30s during this time and am going strict again leading into the next MRI, I've got 2 months to clean up my diet. Link to comment Share on other sites More sharing options...
GFChris Posted February 4, 2014 Share Posted February 4, 2014 I've been living with MS since my diagnosis in 2005. Funny: I was initially on Copaxone and am now on Rebif. Since being on Rebif (7+ years) I haven't developed any new lesions. My last exacerbation was 2007. I get my annual MRIs in Nov/Dec and did my Whole30 last summer. I based my results on before and after numbers (scale and measurements) and moreso, how I felt, both overall and after doing reintroductions. If you have any noticeable change in your MRI, that would be interesting additional data. Link to comment Share on other sites More sharing options...
runningms Posted February 6, 2014 Author Share Posted February 6, 2014 Hi Chris, Thanks for taking the time to respond. My next MRI will be in March to see how the solumedrol, strict adherence to the copaxone and gluten free life holds up. I'm not 100% whole 30 compliant sometimes I use gluten free noodles because sometimes you just want a noodley noodle you know? All of my kitchen staples have been moved to Whole 30 approved and am excited to hunt down some Tessemae's this weekend. We have started cooking a lot and also have been buying better quality meat and eggs. I'm reading labels on everything we buy and am purchasing better quality, convienece foods to have on hand to make cooking faster (like the marinara I used last night, all veggies and spices no added sugar). It offers me hope that eventually maybe my MRIs will start coming back clear and that I can be truly in the remitting part of relapsing remitting. Thank you again for your response! Link to comment Share on other sites More sharing options...
GFChris Posted February 6, 2014 Share Posted February 6, 2014 You're welcome. I should add that I've been gluten-free since the fall of 2006. 2006 was a big year of multiple tests for me after my MS diagnosis - felt like a lab rat! The upshot is we determined that while I don't have celiac disease, I am gluten-sensitive. I've been militant about being off gluten since then, and sometimes wonder if it's a coincidence that my last big MS flare-up was Dec 2006/Jan 2007. Link to comment Share on other sites More sharing options...
LalaMadeWhole Posted June 5, 2017 Share Posted June 5, 2017 Hi, I'm a newbie and haven't started yet. I also just found out that I might have MS. They said they found lesions on my brain and that they would need another MRI with contrast. I am distraught but oddly calm! Thanks Jesus! I have no clue about MS only that it can take me from my son! I've been scouraging the internet in finding ways to reverse it! I think I'm in shock and really don't know why I'm even typing this right now. What am I going to tell my little boy? Im supposed to be here for him! Im his sole provider. Im all he's got. What am I going to do? Lord help me! Please. Link to comment Share on other sites More sharing options...
Administrators ladyshanny Posted June 5, 2017 Administrators Share Posted June 5, 2017 Just now, LalaMadeWhole said: Hi, I'm a newbie and haven't started yet. I also just found out that I might have MS. They said they found lesions on my brain and that they would need another MRI with contrast. I am distraught but oddly calm! Thanks Jesus! I have no clue about MS only that it can take me from my son! I've been scouraging the internet in finding ways to reverse it! I think I'm in shock and really don't know why I'm even typing this right now. What am I going to tell my little boy? Im supposed to be here for him! Im his sole provider. Im all he's got. What am I going to do? Lord help me! Please. MS is not an immediate death sentence so I think, that while this is shocking news, you have time to take a deep breath and let your thoughts calm down. Did you read the thread above that you posted in? The one that discusses how diet change appears to have initially helped resolve flare ups? Take it easy. Go to your support people/person and digest this news. Then when the shock has passed, you can make more informed decisions. Link to comment Share on other sites More sharing options...
LalaMadeWhole Posted June 5, 2017 Share Posted June 5, 2017 Thanks. Link to comment Share on other sites More sharing options...
runningms Posted June 5, 2017 Author Share Posted June 5, 2017 MS will not kill you. I have MS and have had it for many years. I've had some flare ups, mainly because of medication issues but I've rebounded. I am running a marathon in October. There is no way to 'reverse' it, you can stop its progression and go into remission as I have. My best advice is get off of Dr Google it is only going to drive you nuts, listen to your doctors and process with your friends/family. Then start doing your research because you will know how to debunk some of the internet nonsense and become your own health advocate. If a medication is being pushed on you ask questions until you feel comfortable with the decision. I had tysabri pushed on me but my gut told me that wasn't right and the doctors couldn't give me a good reason as to why they were suggesting it over the first line medications. I take copaxone and it works for me. Be gentle with yourself. If you workout, keep working out but listen to your body, heat is not your friend. If you don't workout start something, if you don't use it you lose it. Stay off of the internet support forums for MS I've found they hurt more than they help, the stories seriously terrified me and it seems like they are all depressed. I have too much to live for to be dragged down into the internet pity parties. Anyway, I hope this gives you some hope and comfort. My favorite saying is "Multiple sclerosis is just two words, not a sentence". Feel free to message me via Facebook if you'd like to chat more. Link to comment Share on other sites More sharing options...
LalaMadeWhole Posted June 5, 2017 Share Posted June 5, 2017 Thank you so much! I need as much info as possible! Any resources of medicines or etc would be so helpful! Thanks again. I will take note of that quote! Link to comment Share on other sites More sharing options...
kirkor Posted June 6, 2017 Share Posted June 6, 2017 Look for Dr. Terry Wahls and her book and videos; she's had good success abating her MS with paleo principles that also dovetail nicely with Whole30. Link to comment Share on other sites More sharing options...
LalaMadeWhole Posted June 6, 2017 Share Posted June 6, 2017 11 hours ago, kirkor said: Look for Dr. Terry Wahls and her book and videos; she's had good success abating her MS with paleo principles that also dovetail nicely with Whole30. Thank you I will! They have decided to admit to administer IV steroids? Should I be worried? They said I had to stay 5 days! I'm so sorry for turning this thread into a support group! I'm just having a hard time and don't have many answers. I will try to limit my responses to whole 30 A big thank you to those who responded! Thanks so much for sharing a few resources and encouragement. They mean more to me than you will ever know! Link to comment Share on other sites More sharing options...
runningms Posted June 6, 2017 Author Share Posted June 6, 2017 I've never had to be admitted for IV steroids it has always been done as outpatient for me at my doctor's office or via an infusion clinic. But I have been treated with 5 days of IV steroids, this is kind of the norm to calm a flare down unfortunately. I would love to say only changing your diet will fix all of your issues but sadly that isn't the case, sometimes you need to do the steroids. In my case when I lost my vision I wasn't messing around, I took the steroids because I wanted to see normally again and if there was a chance that the steroids would give me that back I was taking it. If you are not seeing a neurologist that specializes in MS I would suggest finding one in your area or traveling to one, this will hopefully give you more comfort and resources regarding the disease. If your doctors aren't explaining things to you or aren't making you feel comfortable with their treatment plans ask, ask, ask until they have answered all of your questions. I had one appointment where I just grilled the doctor until I understood what the disease meant for me, what treatments were available and why they were suggesting a certain treatment over an another. We have a couple MS speciality clinics here in the Milwaukee area and I drive about an hour to see my neuro. This is not the first specialist I saw though, the first one did not answer my questions or make me feel comfortable in my treatment plan so I found a doctor who worked with me and made me feel comfortable. This is a scary time for someone newly diagnosed and your doctor should recognize that. Good luck, the side effects from the steroids are a bitch, make sure you have hard candies everyone's disease process is different so your experiences will be different than mine, I'm just sharing what I've gone through Link to comment Share on other sites More sharing options...
LalaMadeWhole Posted June 13, 2017 Share Posted June 13, 2017 Do any of you have any resources/websites for MS Medications? Reviews/Side effects? Any information that you have found helpful would be so appreciated. I'm trying to prepare myself for my 1st appt tommorow after being released from the hospital. are there anymore whole 30/ms blogs that you all frequent? Link to comment Share on other sites More sharing options...
LalaMadeWhole Posted June 14, 2017 Share Posted June 14, 2017 On 6/6/2017 at 0:46 AM, kirkor said: Look for Dr. Terry Wahls and her book and videos; she's had good success abating her MS with paleo principles that also dovetail nicely with Whole30. thank you for this information! I just ordered her books and it definitely gave me so hope! <3 Link to comment Share on other sites More sharing options...
sam_marie Posted June 17, 2017 Share Posted June 17, 2017 I completed my first W30 round on 4.10.17. This past Thursday, they finally confirmed my MS diagnosis. I will begin Copaxone next week. I don't know why but I decided to Google "Whole30 multiple sclerosis" and this board came up. Glad to hear positive outlook from you all and I will look up Dr. Was and her book. Link to comment Share on other sites More sharing options...
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