Hello. I am new to having MS (or at least to being clinically labeled as such), so I am trying to attack it as hard as I can. I have been doing the diet now for probably only about 3-4 weeks or so. I have eliminated all of the main offenders, as well as done my best to watch sugar and fats, etc. I was feeling like I was getting some where in knowing how to do it, how to make foods, how to continue to feed my family, and make it all work. I have also been experimenting with supplements--found the soy based supplements to make me feel worse, or that seems to be my initial gut feeling on them, so I quit taking them. SO, yesterday I had a follow up with my neurologist. I wanted some medical direction in making sure that I am not eliminating too much or taking too much of one supplement but not another, etc. I told him about the diet idea. He would hear NOTHING of my attempts and knocked it all down so fast that I really couldn't even come up with a reaction other than, "okay." So, I am trying to stick to it without any support other than my husband and a couple of friends who don't think I'm nuts. I am also looking for a holistic or alternative doctor who will follow my attempts with me. I hope to find one. What's funny is that I thought I was feeling better, but my appointment yesterday made me feel so nervous, anxious, stressed out, etc., that my numbness, exhaustion, and so on is here in full swing. Could it be possible that one stressful visit like that could really knock me down this much? I am still sticking to the diet and will continue to do so. Any guidance on supplements would be greatly appreciated. I have read that it is key not to "boost" the immune system, since it is in overdrive anyway in MS?? Is this true? I am really confused on what supplements to take safely for my situation. I want to support my body in healing, but I don't want to boost an overactive immune system!?! I wish the doctors would be open to helping with this. I feel a little lost.
Em, Your note is
Em, Your note is encouraging. Working with someone who has remained symptom free for 14 years in, in itself, encouraging. AND the fact that you neurologist is supportive is wonderful. I wish more would consider being more open minded. I am in Ohio, so a face to face with your naturopath isn't likely. . .hahaha. But, I have found a group of doctors here who focus on preventive medicine through making sure that the body's biochemistry is as strong as it can be--through diet, analysis of sensitivities, supplements, and other alternative measures. I wiggled (persuaded, begged) my way into an appointment as early as next week! I plan to take my diet info, my giant bag of supplements and see what happens. If I like him I will move forward with their VERY extensive testing and see how it all plays out. I have nothing to lose and everything to gain. I'll let you all know how it turns out. justme
Here is some encouragement:
Here is some encouragement: I was finally diagnosed officially today. I am lucky - my symptoms are mild and I have caught it early. I started the diet in the middle of my first real "flare up" and feel that I have gotten a good idea what my problem foods are. I also visited a naturopath who has MS, and has been symptom free for 14 years. Her philosophy is similar to that of the diet, but also considers the candida factor. I have been following a supplemental regiment from her for the last 3 weeks, as well as the diet, and I feel great. One of my symptoms is heat sensitivity, making it really hard to exercise. I can now run 20 minutes without being bothered by that. The best part is, my neurologist is completely supportive of the diet, wants to know all about it, as well as the supplemental treatment. He feels that it would be irresponsible as my physician not to take a keen interest in the choices I make for myself. (Though yes, he wants me to take the drugs)
I know from reading others stories that he is not the normal breed of neurologist. But, he is also young, and I can't help but feel that his open-mindedness is an indication of a new openness to natural treatment in mainstream medicine. This makes me hopeful that by sharing my process with him, he will, in turn share it with other MS patients of his, and hopefully his colleagues.
Also, if anyone is interested in a great naturopath - a real person with similar problems who can act as a guide through this all (forums are wonderful but you just can't beat sitting face to face with a survivor) - and you are in southern California - www.annboroch.com.
Good luck and hang in there for the long haul. Em.
Hello everyone who responded
Hello everyone who responded to my note. . .thank you! Your kind words and just knowing that others out there are doing this and trying to heal or improve life in whatever way possible really makes a difference. From this lesson I have truly learned the power of stress and the impact that it can have on MS symptoms. The stress of that doctor's appointment (as with each appointment prior to it) threw me into a full blown exhausted meltdown. Unbelievable. Every time I go to see him I become a weak, sniveling fool!! Gee, could be a sign that I need a different doctor, eh?!? hahaha Anyway, I will shake it off and get rested up again. . .it will just take some time. I am looking into some alternative stress relief approaches and will share any helpful info. Your responses also helped me to recognize that I am probably trying to do it all, without fail, and with everything just perfectly right from day one. It's hard to slow down and not try to do it all--perfect food prep, perfect label reading, perfect supplementation--and so on. I guess I just don't want to miss even one day's opportunity to turn things around and to give my body the break that it needs to try to recoup on the damage. BUT the reminder of patience is a good one for sure! This process is a trial and error, using ourselves as the guinea pigs! I have to remember that it is a process. First elimination and then testing and trying and monitoring results, etc. I will try not to panic ; ) and keep patience in mind. . .This forum is very helpful. Thank you again to you who wrote. It really did help. --Ana (a.k.a., justme)
Hi justme, I don't
Hi justme,
I don't necessarily have lots of advice to offer, but wanted to say that I'm sorry you had that experience. My neuro was less than enthusiastic about the diet, but just said to do whatever makes me feel good. No direction though. I just wanted to share that I too am really sensitive to anything containing soy... including supplements. I had to stop taking my prenatal vitamin (nursing our 7-month old), because it contained soy lecithin and was making my hand and arm feel like it was vibrating. Stress is also a trigger for symptoms. So, just wanted to say that you're not alone. Hang in there. That is awesome that you are sticking to the diet. Keep it up! :)
Rebecca :O)
Good Morning from
Good Morning from California!
I too am new to the diet. I got the book last week and began the diet the next day. I was diagnossed with primary progressive ms in May of 2008, but since have been rediagnossed with primary progressive mylepothy. My UCSF doctor said it just means that I could still have ppms, it just doesn't show in spinal tap, or MRI. I relate to those with ms and am desperate to walk and feel better, so this diet and website are a welcome perscription to my healing. Stress is what seems to make my symtoms so much worse. Doctors can be so discouraging, and I am so sorry you had to have that experience. In May, the MS specialist for the HMO I belong to was so non-compasionate, he gave me no hope at all. Fortunately my regular neuro. is a kind man and open to alternative therapies. He perscribed Low Dose Naltrexone which I have been taking since June 2008. I don't know whether it works, but it certainly doesn't hurt. Attitude, Hope and Prayer, are a path to healing, and with support and continued research WE CAN overcome our disabilities.
Hi, I feel the same way as
Hi,
I feel the same way as Sarah. The neurologists are rarely interested in diet-in fact it has been my experience not to even discuss it. As far as supplements go, after trying many things including a naturopath, I don't take anything except vitamin D. For me, I realized I was desperately seeking the magic bullet and jumped on many bandwagons. The key seems to be reading your body and feel what symptoms are food provoked. It has taken me a year to fine tune this. I had a very stressful year and wasn't paying attention to all sorts of little signals my body was sending me.
Keep up the good work, don't despair, believe in yourself. As Ann and Judi say, time and patience. I regularly look to the book when the going gets tough.
Good luck and pat yourself on the back for finding out about dietary recovery.
Teena Marie
Hi justme. Welcome to the
Hi justme. Welcome to the world of the totally ignorant medical proffession. I feel so sorry that you had such a bad experience with your neurologist, but rest assurred i can safely say the majority of us have all been there, and the best thing to do is pick yourself up, take a deep breath, and carry on your good work. Stress is definately a big factor, and would explain your reaction to your appointment. Do not be intimidated, they don`t know everything!!!
If you are keeping to the diet ,supplements are not the be all and end all. A good healthy balance of the right foods will give you everything you need, but if you feel a little extra is needed, i use a company called Higher nature and they list all the ingredients so you can be sure of what you`re taking, and the majority of their products are dairy, wheat gluten, yeast and soya free, so perfectly safe.
I hope this little bit of advice helps. Stick with it, it does work, but just takes a little time to find what works for you, we are all so different!!! I am 6 months in and i now know i`m starting to see and feel definate improvement, of which even the dreaded medical people are having to admit to!!! plus keep checking out this site, and ask your questions, there`s always someone here with help and support.
Good luck. Regards Sarah.