Other specialists you may have seen?
I am wondering if anyone has seen either a geneticist or immunologist in the context of your MS. My brother is encouraging me to go, and he is also encouraging me to eat a keto diet. He doesn't quite articulate what he thinks these other doctors can do for me. My brother reads a lot of books about healing yourself, food is medicine, etc.
I have my 2nd full Ocrevus infusion set for July 15 and cannot wait. I don't understand why I have to experience the "crap gap" but I do. Last time, it was extreme fatigue - so much effort to get through the day. This time, I am more fatigued, but mostly feeling pain/tingling/squeezing/burning/even more numbness mostly centered in my right arm and hand although my left hand/arm/shoulder and right leg sometimes get in on the act. Nothing that completely interrupts my day, but I definitely have a heightened awareness and need to make adjustments.
My brother would love for me to stop taking medications and clean up my diet to address the MS. I got the diagnosis last year at 49 and clearly have had MS for a minimum of 10 years. My physical symptoms affect all four of my limbs. I am not at the point where I am willing to risk a relapse that impacts a different part of my body because I am experimenting with food. I am willing to take on the risks of the medications to prevent relapse. My brother is clearly speaking through love and does not apply pressure. But, it is always something he brings up hoping I'll educate myself. (As if I'm not, LOL!)
Hi there, I’m not a specialist or in the medical professional. I’m currently on Keto diet and I can vouch that I’ve lost over 20kg in 6-9 months. Still need to lose more to be my ideal BMI which is a load of nonsense. In theory the diet changes should affect the MS. Unfortunately there doesn’t seem to be any concrete information on what diet is best for MS and what vitamin supplements are best. The only reason I stuck on the Keto as it was working for me and loosing weight will certainly help my weaker leg as I’m not carrying extra weight. I hope it all works out for you and you find what your looking for. Your brother is only trying to help you very similar to my wife helping me. She can overload me sometimes with too much ranting on about something that I’m not listening to as she mentioned it previously. I was diagnosed last year too in August. Still waiting to start Ocrevus.
Hi- I was Dx in 2005 (after 5 years of minor symptoms before the major one) and get considerable pressure from my husband to stick to more of a Keto diet and push the exercise up further. Currently 9 months into Ocrevus after 11 years on Copaxone and 4 on Rebif. My husband has UC and as both our conditions are cause by inflammation he thinks his diet would benefit me as much as it has him. His UC is remarkably under control and he is very fit and active. I haven't been working the past year so have been able to be in better control of what I eat and having an hour a day in our home gym. This has helped a lot and I have lost 10 pounds without really trying. I'd like to lose another 10 but seem to be at a steady weight spot. I just moved the dial down some and can try for more later. My husband takes all sorts of measurements and tracks his HRV (heart rate variability), etc to see when his body is under stress. Things like his "5 day fast" he was doing monthly would really stress his system as well as any time he gets sick, etc. I've made it clear to him (and sent him the research) that stress and sleep are the two biggest "controllable" factors that can influence progression. If what he is suggesting will stress my body it will be counter-productive. I told him that everything I read and am told by my Neuro, Dr and PT say I should listen to my body. I haven't seen anything that tells me I should listen to my husband ;-0 That said I will continue to do what I can within reason. What I have been doing better on is more like the "real food" type of diet (not, necessarily the one of that name) It is just a common sense, heart-healthy, diet that avoids "fake food". Basically all fresh, typically organic, good greens and quality protein. Dr Boster encourages this approach https://www.youtube.com/watch?v=3M5pSb9SRJU&t=46s The Wahl Protocol (Terry Wahl) has a strong case of her diet working, for her, and a subset of people. I think it is valuable considering her approach/advice. Others do well with a vegetarian diet although that is what she was for years as she developed MS. There is also the Swank and OMS, oh, my...there is a lot of approaches out there and people to tell us what to do ;-0 Pay attention to what works best for you and makes you feel the best, causes your body the least stress and helps you sleep. I am a smaller person at only 5'2" and 140 lbs. I did not experience the "crap gap" others have described as they approach the end of their Ocrevus 6 month cycle but am on guard for it. I think I saw it documented that the dosing or frequency could possibly be adjusted for the size of the person. That would make sense to me and I'm sure they are looking into it. You could ask your neuro if you can be treated on the short side of 6 months. I say- listen to yourself and weigh in what your buddy suggests but "know thyself" is the best thing we can do. If you buddy wants to be your researcher have him expand into diets other than just Keto for a more balanced perspective and let him know the jury is still out on what the "best diet" for MS is. I think things are pointing towards a carb avoiding diet that is based on real and quality food.That is what makes me feel best.