This Is MS Multiple Sclerosis Community: Knowledge & Support

I realize we have the superest autoimmune disease, but how many of you think there may be some connection to a metabolic disorder?

It seems like everyone I meet has an aunt, a friend, a mother or a grandmother with MS.

Now that I stop and think about it.... maybe we really "are what we eat"....

But I also have a theory that, unfortunately our ancestors indulgence may make our enzymes not float so well. And it might not have crap to do with what we take into our own bodies. A blueprint may be set for many of us.

It may sound crazy. I constantly think about all of this. After all, as much as I don't want MS to run my life, unfortunately it runs my body's life. Wish I could seperate my body from my mind. Or make that, my soul from my demyelinating mind. And spine, for that matter.

Some of your prior discussion in this area reminds me of the movie Lorenzo's Oil. It's a good movie and I recommend watching it in the case that you haven't already. My personal opinion is that some type of metabolic issue might be part of the genetic predisposition to MS, e.g., vitamin D and/or omega-3 fatty acids.

This brings up the issue of epigenetics, i.e., the regulation or missregulation of gene activity. It has been show with laboratory animals that certain traits such as fur color in mice can be changed by diet. In effect, the diet has changed the regulation of the genes responsible for the fur color. In addition, it was found that this change was inheritable by the mouse's offspring. They were born with the altered fur color. The suggestion was that in people, the activities of prior generations such as smoking, diet, excessive drinking, may be changing the individual's gene regulation via epigenetics and that these changes might be susceptible to getting passed on to future generations.

For more info on epigenetics you could check out a show that Nova on PBS recently did titled The Ghost in Your Genes.

NHE

NHE:

Thanks for the recomendation on the Nova show. In fact, I love watching Nova. Genetic disorders and traits are beginning to fascinate me, too.

I have seen Lorenzo's Oil and very recently in fact. Although ALS is a very different disorder than MS, Lorenzo's father inspired me to research alternative treatments for MS. It also helped me better understand metabolic disorders. Very scientific info in that movie.

It completely grabbed a hold of my heart, that movie.

As you know, it is a true story. It also helped me understand that the medical system is more stubborn than most people realize. Stubborn, for lack of a more offensive word.

It also made me feel lucky for having MS and not ALS. I've researched ALS. Apparently there is also an adult form, AMN.

the movie also scared the crap out of me. When I think about how I smell when I eat fatty foods and protiens, it is clearly obvious it is something metabolic in nature.

I am also afraid because it all doesn't add up to MS, at least from every neurologist I've talked to and my countless google searches. That's not to say there is not a correlation, I just have not found it in countless hours of research.

The closest "anything" I could find relating to the odor emitting from my body is called, Isovaleric Acidemia. I am certainly not afraid that I have this disease, but if you search around you'll find that it is metabolic disorder, who's specific trait is this odor..... Isovaleric Acidemia is prominent in babies, but there are adults who have been reported to carry this genetic disease. The specific odor problem relating to this is what kind of metabolic dysfunction concerns me, however.

Honestly I could think myself into madness reading about all of this. I gotta cut back on my google surfing

NHE:

EUREKA!! So, I have limited my google research to specifically finding an answer. I can't do that from reading stuff on the Internet all day, so I have found the phone number to a metabolic disease specialist in my area.

I called him this morning, it was his cell phone number. This man had the best bed side manner I have ever found in a doctor.

I mentioned my concern about Isovaleric Acidemia and I explained I've had this odor for a long time.

I also explained that eating certain foods makes me smell like this.

He told me that I don't have to worry about Isovaleric Acidemia, but there are tests.

I was very close, however, in my research. He mentioned that Isovaleric Acid is causing this very specific odor from my skin. He explained that changing my diet is really the only treatmet for this, and since I've had it for so long and have not died, that most likely I do not have the specific, "Isovaleric Acidemia".

I am so glad I talked to him.... This problem has riddled my mind since I was 15.

I mentioned that I have MS and I asked if there was any correlation, and in fact, there is none (that he could speak of).

I do have a very sensitive system, however. The MS, the odor and cystic acne (I've had all my life) goes to show that I am a genetic mess.

Anyway, I'm very excited about this finding and had to talk about it. Thanks for listening.

Hi Jim,
It's good to hear that you found somebody who can help you and that has a decent attitude so that they are approachable. I used to be in contact with some doctors at my university when I was a graduate student and found that the best way to contact them was by email. It sure beats paying $$$ just to have a simple question answered. However, I've also run into doctors that have an opposite attitude towards patients. One time when I was at a Biogen sponsored talk I was asking the doctor some specific questions that made it clear that I was somewhat more knowledgeable than the average MS patient and he announced to the entire group "Ladies and gentlemen, we have a ringer in the audience." 'What a jackass' was all I could think about him after that.

Anyways, I sincerely hope that this doctor will be able to help you. It sounds like he can. It will be interesting to know the specific dietary changes that he recommends and what the effect, if any, you think that they might have on your MS symptoms. I have done a little bit of reading on how dietary fatty acids can influence the production of different types of prostaglandins. For example, long chain saturated fatty acids tend to promote the production of proinflammatory prostaglandins while omega-3 fatty acids tend to promote the production of anti-inflammatory prostaglandins. With respect to this information, you might be interested in a book titled "Fats that Heal, Fats that Kill" by Udo Erasmus. It could be that reducing the amount of saturated fats in your diet to help your metabolic problem, if that's one of this doctor's recommendations, has a side benefit of helping alleviate some of your MS symptoms.

NHE