NO CHOCOLATE!!!!

All artificial sweetners give me a headache and they can also add to your depression.

I have heard so many with MS say that ALL artificial sweetners give them a headache or migraine. When I was preggers in 1983 the MD told me then STAY AWAY! we have no idea what effect it can or will have on a developing fetus. That got me to thinking more closely about what I was shoving in my pie hole while I was making a baby. I rarely had a diet anything cause I was super skinny then but it made me switch gears and think before I ate.

Years later I know within 5 minutes of eating something with splenda or aspertame or equal. My brain feels like its boiling. I am dizzy, and nervous and really feel ill. I had a close friend tell me that she used to feel that way but it passed after sticking with her diet soda. She really wanted to lose weight. MS was hard enough skinny, let alone plump she said. I was shocked to hear that even tho something made her quite sick she kept eating it and ignored what her body was telling her.

I eat a no red meat, low Saturated and Trans fat diet (if I see Trans on the label, I don't buy). I took these aspects from the Swank MS diet.

I try to eat a balanced diet, Swank was entirely too restrictive for my tastes starting out (I've been eating this way 2-2.5 years now). I found foods I like that avoid red meat and the fats mentioned, avoid eating away from home (no fast foods).

I'm certainly no angel with my foods, I don't eat organic, I eat some processed stuff (I work a full time job... I wish I could eat everything fresh out of the ground, just not possible for me with my schedule).

I'm not on DMDs, Ty, nadda. Just 2 pain medications. I will say up front my MS is low on the EDSS (sensory symptoms) and I've had 2 relapses (one was ongoing a long time, the second about 2-3 months after the first one and the round of IVSM/prednisone). Then I changed my diet a couple months after relapse 2 and the rest is history.

Remission!

I am one of the not-so-lucky Crohn's patients who can not eat fiber, foods with residue (no whole grains) . . . meaning I fare best on processed foods! I hate it, but no matter what I do, I can't change it. Before Crohn's I was >75% vegetarian, at over 50% raw foods, and loved fiber! Now I can't even look sideways at whole wheat bread, Shredded Wheat cereal, or raw celery and carrots. Arg-g-g-g-g-h!

So when it comes to nutrition for my neuro issues/MS/TM, I am unable to eat so many of the things that I know would be good for me. What I can do is balance meat/fish/poultry with steamed veggies (limited to those that are not blockage-producing), peeled fruits (no more biting into a juicy apple or pear -- I have to peel them first) and find new and exciting ways to prepare the same-old same-old week after week.

I mean, who else has problems with the blueberries in their yogurt, or can't eat lettuce? Bleah! I hate these diseases!

Hey Lefthanded, you asked who can't eat blueberries or lettuce? Me. Because I have Porphyria. It has nothing to do with roughage in my case. It has to do with the chemicals in those foods. Lettuce and all cruciferous veggies are high in sulfur. I am not sure what
blueberry's problems are, maybe sulfur. I can eat other berries, especially blackberries.

I have been on the Swank diet for over a generation, so long I forget what was the start date--I know it was within weeks of dx of MS. The only main modification is that I often
eat two eggs for breakfast. Swank allowed only two a week. I have always gotten on well with eggs, even when I was pregnant and could eat only eggs and oranges during the fourth month.

Right now I am feeling that healthy people should eat more fat, i.e., more than the organic canola and olive oils that I eat--a health site recommends organic butter, but of
course that is not on Swank. Swank felt we had autoimmune reactions to fat, which attack myelin. He was one of my physicians, a wonderful man.

Because I have porphyria I also cannot tolerate Aspartame and Sweeta. I knew that long before dx.

I swear, I must have that disease. I have so many of the sx, and yet no one has been able to prove a thing. What kind of MD would I seek to get ruled out or ruled in? Would I have to be in a flare to be dx?

I used to be a clean eater when I was a kid, and then I moved off the rez, and ta da! the world was full of instant food. I went hog wild. When my DD developed really bad celiac, we had to really reconsider what we put in our pie holes.

Dejibo, I was on a very good diet while with my parents, and got way off it when I went to Stanford, and had my first (undiagnosed) big Porphyria attack. Yes, food plays a giant role in controlling porph, but it's not the only factor.

What kind of doc to get dx of Porph? I am afraid that merits a long answer, but I'll try.
A hematologist is usually the diagnostician for porphyria. Yes, the test is best given when one is in active attack; this is especially true for some forms of porphyria. Because you have the sun sensitivity, you may have HCP or VP (we discussed this before). To get a proper HCP diagnosis, you MUST have stool test as well as urine test.
And preferrably have it while in attack. However, I did get a positive test from my stool
even while not in attack, although it was not as "high" positive as it might have been in
attack.

If you can travel, I can suggest one possibility of a doctor; go to University of Utah at Salt Lake City. I have never been there, but I have heard they have a good laboratory for testing porphyria. You must insist, however, that the dx be related to family history as well as to test scores, and you already have a mom who has the symptoms. Another
outstanding place--where I have never been, but have heard very good reports--is Loma
Linda University in California (I guess it is in the town of Loma Linda east of San Diego).
The main diagnosticians I had are retired. If by any chance you have VP, which is also
sun sensitive, I believe there is another test given which is peculiar to that form, but I forget what it is called. I would really try Loma Linda, if I were you. But if you can't go there, you can start living by the porph protocols. Many people do this who cannot get to a really experienced diagnostician.

mariel

Mariel