What Else?

by T.

I have had MS for one year and been on Copaxone for that long. I am getting worse every day. Leg stiffness. Hand very numb. Feeling out of balance. I have tried all the diets, low fat, no gluten. (I have tried) exercise, massage, yoga etc... I don't know what else to do to stop my symptoms from getting worse.

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Apr 08, 2011
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Consistency or Change Pt 2
by: Akrista


Unfortunately, chocolate is a trigger for many people with MS according to the book Managing Multiple Sclerosis Naturally by Judy Graham. This is a book you might want to buy or check out at the library.

The author, Judy Graham, tells everything she uses to help manage her symptoms using natural products. Maybe there is something in there that you haven't "tried". Cir has tried a lot of things, but even we learned about some things that we had never heard of before.

Find the book and check out some of the other things to see if they help. And if you truly are all tried out, maybe you need to resign yourself to progressively getting worse. I know that you don't want to do that or you wouldn't have written this message.

Your progress may be minute, or very small, at first. It may seem that you are going two steps forward, two steps back. But you are getting there, slowly but surely.

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From some of the things you said, you sound like you have a progressive form of MS. You may have to just accept this and still do something a little extra every day - exercise, yoga, etc.

Managing your multiple sclerosis symptoms is more like changing your lifestyle. You can't just try something for a little while and then stop. You have to commit to doing some type of (exercise for example) from now on.

Hope some of this helped. Check out the book and see if any of the suggestions might help you. I also, wondered if you have ever tried any of the interferons. Cir can't take any of those, because he couldn't tolerate the side-effects.

Don't feel you have to stick with a particular medication just because the doctor says so. Try another one to see if it works better. You can always come back to it later.

One more suggestion: You didn't say whether you took vitamins/supplements at all. If not, you may want to start using D3 (at least 6000 per day), B100 complex for starters. D3 is supposed to help your symptoms and B100 is supposed to give you energy.

Again, hope at least some of this helped.

Akrista

Apr 08, 2011
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Consistency or Change Pt 1
by: Akrista

Hi T.,

First of all I need to start with a disclaimer. We are in no way doctors or professionals on this site. We are two people who have lived with MS for just about 30 years. The answer I am giving is not intended as medical advice. We don't know your case specifics - age, weight, type of MS, what types of medications you are taking, family history, etc.

This information is for inspirational and/entertainment purposes only. If you experience a medical issue or emergency, please call your doctor or head to the emergency room.

Now for the answer based on what I know from your question:

You mentioned that you "tried" many things, the diets, yoga, massage, but none of them worked. Unfortunately, trying and committing to something are two different things. You would need to find something that worked even just a little bit and commit to it for 6 months to a year at the very least. Only then can you really say it didn't work.

You need to do your diet consistently for months before saying it doesn't work. One way to see if a diet "works" is to start a food diary before you change the way you are eating. Write down everything you eat for at least 4-6 weeks. Along with that, write down how you feel after eating it.

For example:
Breakfast - choco chip muffin, herb tea with honey, boiled egg, and bacon strip.

Felt tired and drained 2 hours after eating. Numbness in my hand was worse.

The same thing with lunch, dinner, snacks; etc. At the end of the recording period, go back and read it to see if there are any patterns when you ate certain foods. If so, then those are probably foods you have a sensitivity to.

Say, every time you ate something chocolate candy bar, you felt extremely tired. You could safely say that chocolate makes your symptoms worse and you need to eliminate it from your diet.

(End of Part 1)

Dec 31, 2014
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Update about diet and D3
by: Akrista

Hi again, T.
I know it has been awhile and I hope all is well with you, or at least that you haven’t progressed too much more from when we answered your question. Since then, Cir (and I) have found another diet, or rather, to us, it is a way of life now. You may have heard about it as well, and that is the Paleo diet - more specifically, the AIP or Autoimmune Protocol.

We first heard about it after watching a TED Talk by Dr. Terry Wahls, a doctor who has MS. She had progressed to the point of needing an anti-gravity powerchair and was almost at the point where she would have to stop working because of cognitive and mobility issues.

She began studying which foods were good for the brain and came up with the AIP diet for MS. She is now walking again and still working. She still has some of the MS symptoms, but is now able to control them with diet. Some of her patients have autoimmune diseases and they have experienced similar healing effects just as she has by following this healthier way of eating.

A brief explanation of the diet is basically you eat whole, organic fruits and vegetables, grass-fed meats, and free-range poultry. You eliminate all grains and gluten containing foods, as well as legumes. Also, there are fruits and vegetables in the nightshade family. These are eliminated as well.

It seems that for people like you and my husband with autoimmune diseases, nightshades are a trigger for many of the symptoms that you experience with MS. When only foods that are beneficial to the brain and nervous system are eaten, then the body has the tools it needs to heal itself.

Cir and I both feel much better on this anti-inflammatory diet. And another benefit is the weight loss. We both look and feel better than we’ve felt in years. We’re not saying this is a one size fits all diet, however, it’s worth a look-see. Who knows - maybe diet and nutrition will be the medicine of the future. (I think a famous person said that once - I’ll have to find out and let you know who it was).

The other change we’ve made recently, has been to take higher doses of vitamin D3. This has stopped my foot pain, and helped Cir to feel better overall. Vitamin D3 has been suggested for MSers for quite awhile now and a doctors in South America and Europe have begun using it in very high doses to treat (and they say cure), their MS patients.

Check into both of these when you get the opportunity. One or both may be exactly what you need.

Take care, and may the New Year bring health and happiness to you and your family.
Akrista

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