Okay I'm a little stunned right now - I just found out my sister has been diagnosed

[Chris in CA]

with MS - she is only 40

I just got off the phone with her and she told me they are doing a MRI in a couple of weeks - she has known for a couple of months but hasn't told anyone (except her dh) till now - actually I am the only other person who knows.

Those who pray - could you please pray for her - her name is Casey

 

thanks

[Starr]

I will pray for Casey and the rest of the family. What a shock to all of you.

[Brindee]

I am praying also!

[Chris in CA]

she is not a believer, but she grew up in the church.

She's such an adorable person

[Carol in Cal.]

There is a lot of variation in treating this disease. I hope that she has found a really good specialist.

[kalanamak]

with MS - she is only 40

 

 

MS is a young person's disease, and I'm happy to tell you 9/10 people do really well with it. It is the 10% we "hear" about. Be sure she gets a MS-oriented neurologist.

 

:grouphug:

[Rhonda in TX]

She was diagnosed at about that age. Maybe a few years older. A friend's DD was diagnosed at 18. It's a strange, mysterious disease.

[mom4him]

with MS - she is only 40

I just got off the phone with her and she told me they are doing a MRI in a couple of weeks - she has known for a couple of months but hasn't told anyone (except her dh) till now - actually I am the only other person who knows.

Those who pray - could you please pray for her - her name is Casey

 

thanks

I am praying for Casey:grouphug:

[HeatherLynn]

I have MS. I was diagnosed in 2004, then told my diagnosis was a mistake. Then, in September this last year I had what we now know was a "flare up" and I was unable to walk. After 7 days in the hospital, and a few tests by a world renowned MS specialist, I am now RE-diagnosed with MS.

 

Good news...I can go the rest of my life without another flare up. I was scared at first but I am not now. People live with this disease and live a GOOD quality of life. For me, when I get too stressed or fatigued, I flare. So I know to stay away from fatigue or stress (or try hard).

 

Of course I will pray for your sister. I pray she is not one that the disease debilitates. There are great medications and now that she is diagnosed she can move forward to try to stop or slow the progression of the disease.

 

What type of MS did they diagnose her with?

[Denisemomof4]

I was convinced I had this a few years back. About 6 years ago I was losing the feeling and use of my arms and hands, and then my legs. I had a bee fly up my pajama bottoms and sting my legs 9 times and felt nothing. I'd burn myself and the pain was almost non existent. Then I'd get better for I believe it was 1.5 years and it came back, worse. I saw two neurologists whom didn't help me. Right before I was due to fly to China I got bad again and was afraid I wouldn't be able to hold my baby. I went online and did research and completely changed my diet. There's a man who was confined to a wheelchair for YEARS and reversed his ms by having as little saturated fat as possible (under 15 mg) and basically stuck to the unter/gatherer diet. I bought all natural meats. I slowly watched all my symptoms disappear. if I relapse on my diet, my arms are the first to show me. I'll get electric shock going up and down my arms. So then I become careful again.

 

I hope and pray your sister can be helped. I was going to check into bee therapy. I've heard great things about it.

[MelanieM]

My mother was diagnosed with MS in her mid-thirties. 20 years later, she's still doing well and living an active life. I trust your sister will get the support she needs to do the same.

 

Holding your sister, your family, and you in a space of much love and light.

[Kathie in VA]

Oh, I've had that phone call also. My sister has MS and she found out at about the same age. Hers is the kind that comes and goes with stress a big trigger (but not the only one). However my sister is doing so much better than the docs can believe! They look at her MRIs and look at her and have a hard time believing they have the right files! Prayers have done sooo much for her. God is so powerful. My sister is now 52 and still goes dancing for fun!

 

I was convinced I had this a few years back. About 6 years ago I was losing the feeling and use of my arms and hands, and then my legs. I had a bee fly up my pajama bottoms and sting my legs 9 times and felt nothing. I'd burn myself and the pain was almost non existent. Then I'd get better for I believe it was 1.5 years and it came back, worse. I saw two neurologists whom didn't help me. Right before I was due to fly to China I got bad again and was afraid I wouldn't be able to hold my baby. I went online and did research and completely changed my diet. There's a man who was confined to a wheelchair for YEARS and reversed his ms by having as little saturated fat as possible (under 15 mg) and basically stuck to the unter/gatherer diet. I bought all natural meats. I slowly watched all my symptoms disappear. if I relapse on my diet, my arms are the first to show me. I'll get electric shock going up and down my arms. So then I become careful again.

 

I hope and pray your sister can be helped. I was going to check into bee therapy. I've heard great things about it.

 

This is interesting. My sister is on a low fat diet of some kind. Very simple she just watches the total fat per serving. Must be something to this...

[mommyto3]

My mom was diagnosed with MS 6 yrs ago. I guess she fits into that 10% because it has drastically changed her life. She hasn't driven more than a handful of times in the last 7 years. She is qualified as handicapped and has a parking permit. She walks with a cane, often has trouble standing up from a sitting position, and uses a wheel chair for extended periods of walking. I don't say all that to scare you, only to say that MS isn't typically a walk in the park.

 

There are lots of treatment options that can help. My mom has been on self-administered shots for years. She's also on a ton of other pills. She just recently had two rounds of chemo and the last round seems to have helped some. She was first diagnosed with relapsing/remitting MS, but has progressed to secondary progressive. BTW, she is 53yo.

 

Prayers for your sister!

[mommyto3]

BTW, my mom's original neurologist is a research dr who speaks all over the world. He has since stopped practicing and she is now under the care of another research neuro. They said no to bee sting therapy and besides that, she couldn't tolerate it because of what it would do to her body. And I would venture to say she's on a low fat diet because she barely eats. LOL What works for one person doesn't necessarily work for another person. Just as each person's symptoms are often different.

[jensway]

We will be keeping Casey and family in our prayers. :grouphug:

[HeatherInWI]

She might want to try an anti-yeast diet and a molybdenum supplement. I know personally a lady who had severe progressive MS, to the point of being wheelchair bound, and an anti-yeast diet and molybdenum supplement cured her. She's very active -- on two legs! -- now.

[Spy Car]

duplicate post

Edited May 31, 2009 by Spy Car

[Spy Car]

Chris, I worked on a television series called "The Incurables" which dealt with the true-life human dramas of people with serious illnesses who either didn't find answers in traditional medicine and turned to alternative measure, or integrated mixed modalities of western and alternative medicine.

 

One of the stories I worked on especially impressed me. A woman named Ann Sawyer came down with MS. She was a psychotherapist and university professor (a very intelligent woman). And she started researching MS. After long digging she found research by a physician named Roy Swank whose suggested a link between MS symptoms and diet.

 

Ann expanded on his findings and pulled in other elements, and explored the biochemistry of how some foods could trigger immune responses. And she was largely her own "guinea pig".

 

She started by eliminating a broad range of "trigger foods" that cause an MS response in most people, including: eggs, dairy, gluten, legumes, and yeast. And also eliminating "specific triggers" that vary from person to person, but can be scientifically identified through a allergy type test (whose name I've forgotten) or by trial and error and being mindful of bodily responses to particular foods.

 

After a year on the diet Ann Sawyer went from a being a woman who was virtually bed-ridden and robbed of her life, to actually climbing the Grand Canyon. And living nearly symptom free. Her was an amazing story.

 

Her diet is not a "cure" for MS. It aims to reduce or eliminate the triggering of symptoms. But we heard from many (many) people that they were virtually symptom-free simply from eliminating the foods that triggered an immune response.

 

And there is a clear scientific explanation of exactly how this works explained in her book on a bio-chemical level (so it is not witch-doctory).

 

I put this out there in hopes the MS Recovery Diet might possibly be something that could help your sister.

 

All the best to you both.

 

Bill

 

http://www.amazon.com/MS-Recovery-Diet-Ann-Sawyer/product-reviews/158333288X/ref=dp_top_cm_cr_acr_txt?ie=UTF8&showViewpoints=1

Edited May 31, 2009 by Spy Car

[jeri]

My cousin's husband is around 40 or so and was diagnosed with MS about 8 years ago. They were very concerned and have sought the best help possible. Actually, he is doing very well! They are very pleased with how things are and they continue to look for treatments. So, please be encouraged that many people continue to do quite well.

 

Jeri

[LNC]

I'm sorry about your sister! I will pray for her! It's hard to diagnose MS w/out an MRI so maybe there will be better news after that. I also agree that people often do well with MS, but I'm not sure about that 10% in the thread earlier... I think much research agrees with Ann Sawyer's diet and the Swank diet both. Most research MS centers support those two books as helpful, at the very least to your overall health! I posted on an online MS support group recently about my challenges relating to friends and family about MS. Hopefully, reading it will serve you as you relate with and care for your sister!

____________________________________

 

{I'm struggling with friendships and extended family. I'm isolating myself to only my immediate family more and more.

 

Background: I was diagnosed 2 years ago. I had a major attack with double vision and proprioception loss. I was walking into walls and stumbling like a drunken sailor. I was hospitalized with probable MS and had IVSM. I wasn't diagnosed with MS at that point bc my more than a dozen lesions didn't "light up" on the MRI. That is the short explanation of the craziness of those six months. I spent the summer in rehab and went from a walker, to a four point cane, to a cane - which I still use. I also have burning pain from my waist down - mostly on my thighs - like a chemical burn. I have really weak legs. Six months later I went to a teaching hospital and repeated the MRI. It "lit up like a Christmas tree" and I was diagnosed. I've been on Betaseron ever since. I had one more attack last summer and lost control of my bladder - from urgency. I developed more severe spasticity in my hamstrings and I take Baclofen for that still.

 

I am so discouraged almost every single time I'm with or talk with friends and family. IF they ask about MS - which is rare - the questions are along these lines:

 

"Have you been to so and so homeopathic or naturopathic dr? I think that could really cure you, since your shots aren't working." "Medical dr.'s treat the symptoms, so and so cures your body."

 

"Why aren't you better if you have relapsing remitting MS?" "Aren't you supposed to get better?!" or "Are you better YET?!!"

 

"So and so has MS and she works out hard weight training every day and is doing great now- shouldn't you try that?"

 

Or my favorite which I have heard more than once!!!, "My doctors tried to diagnose me with MS too, but I cured myself with the Hallelujah diet or gluten free diet." (I know from this message board that it isn't like dr's are beating down our doors to TRY to diagnose us with MS and we must stand firm and resist!!).

 

The message I get loud and clear is that I'm doing something wrong. I should MAKE MYSELF completely well. That MS shouldn't affect my life in any way. Now, I don't even talk about MS with them. My husband said I just need to be honest and say I have a lot of pain and have to conserve my strength.

 

They aren't really asking how I'm doing though - just offering ways to "fix" me.

 

We go to a large church and I've stepped down from involvement over the last two years. I conserve my energy to take care of our 4 children and home. No shopping, going out with friends, having anyone over, church activities etc. It's a different life than I used to have, but it is peaceful and rewarding to me. My husband and children couldn't be more kind and loving - so I'm thankful for that. I'm just becoming a hermit - I really dislike getting with anyone else besides them!!!}

Edited May 31, 2009 by LNC

[mommyto3]

LNC, I feel your pain because that is exactly what my mom has gone through. Everyone has the cure that if she just did this, she'd be healed completely. If that were the case, then there would be no more MS because there would be a cure. Montel Williams had to quit his talk show because his MS worsened so much. Don't you think he'd be cured if there was a miracle cure out there? It does make the person withdraw and choose not to discuss it with anyone because there is so much misunderstanding.

 

MS is very hard to diagnose. It took my mom nearly 2 yrs before the drs would give her a definite. And that was only after multiple MRIs showing changes to her brain.

 

Relapsing and remitting MS hits each person different. One person may have one relapse and then remit and never have problems again. They may look cured, but the reality is just that they haven't relapsed again. Another person may have multiple relapses with a year. It's just so different for everyone. And there are many things that you can't see, symptoms that only the person and those extremely close to the person know about.

[jenL]

My mom was diagnosed with MS in '94. It was a huge blow to our family, so I understand your shock. Fortunately, she has been in remission for years now, and with careful monitoring of her sleep, stress, and eating, she is able to keep it under control. The doctors are very pleased with her prognosis. I pray your sister is able to take the same path as my mom. It's such a tough disease, but they are making strides in treating it, so she can still live a full life. You'll all be in our thoughts and prayers. Please keep us posted. :grouphug:

[Tammyla]

Prayers for you and your sister.:grouphug:

[freeindeed]

Praying for your sister, you, and the rest of the family.:grouphug:

[Perry]

Chris, I worked on a television series called "The Incurables" which dealt with the true-life human dramas of people with serious illnesses who either didn't find answers in traditional medicine and turned to alternative measure, or integrated mixed modalities of western and alternative medicine.

 

One of the stories I worked on especially impressed me. A woman named Ann Sawyer came down with MS. She was a psychotherapist and university professor (a very intelligent woman). And she started researching MS. After long digging she found research by a physician named Roy Swank whose suggested a link between MS symptoms and diet.

 

Ann expanded on his findings and pulled in other elements, and explored the biochemistry of how some foods could trigger immune responses. And she was largely her own "guinea pig".

 

She started by eliminating a broad range of "trigger foods" that cause an MS response in most people, including: eggs, dairy, gluten, legumes, and yeast. And also eliminating "specific triggers" that vary from person to person, but can be scientifically identified through a allergy type test (whose name I've forgotten) or by trial and error and being mindful of bodily responses to particular foods.

 

After a year on the diet Ann Sawyer went from a being a woman who was virtually bed-ridden and robbed of her life, to actually climbing the Grand Canyon. And living nearly symptom free. Her was an amazing story.

 

Her diet is not a "cure" for MS. It aims to reduce or eliminate the triggering of symptoms. But we heard from many (many) people that they were virtually symptom-free simply from eliminating the foods that triggered an immune response.

 

And there is a clear scientific explanation of exactly how this works explained in her book on a bio-chemical level (so it is not witch-doctory).

 

I put this out there in hopes the MS Recovery Diet might possibly be something that could help your sister.

 

All the best to you both.

 

Bill

 

http://www.amazon.com/MS-Recovery-Diet-Ann-Sawyer/product-reviews/158333288X/ref=dp_top_cm_cr_acr_txt?ie=UTF8&showViewpoints=1

 

I used to work with a physician who later was diagnosed with MS. She has had lots of success with dietary changes also. Here is her website.

[LNC]

I used to work with a physician who later was diagnosed with MS. She has had lots of success with dietary changes also. Here is her website.

 

Wow - thanks for that website!! I have MS and a son with a severe mitochondrial disorder. I have always wondered about the connections. I'm printing lots from her website and emailing her today.

Edited to add: she recommends the book Eat To Live for the print book to read about her eating philosophy. I started that more than a year ago... How funny! I wish I was having her results. I will still print out her ebook to see what else she recommends.

Edited May 31, 2009 by LNC

[HeatherLynn]

I'm sorry about your sister! I will pray for her! It's hard to diagnose MS w/out an MRI so maybe there will be better news after that. I also agree that people often do well with MS, but I'm not sure about that 10% in the thread earlier... I think much research agrees with Ann Sawyer's diet and the Swank diet both. Most research MS centers support those two books as helpful, at the very least to your overall health! I posted on an online MS support group recently about my challenges relating to friends and family about MS. Hopefully, reading it will serve you as you relate with and care for your sister!

____________________________________

 

{I'm struggling with friendships and extended family. I'm isolating myself to only my immediate family more and more.

 

Background: I was diagnosed 2 years ago. I had a major attack with double vision and proprioception loss. I was walking into walls and stumbling like a drunken sailor. I was hospitalized with probable MS and had IVSM. I wasn't diagnosed with MS at that point bc my more than a dozen lesions didn't "light up" on the MRI. That is the short explanation of the craziness of those six months. I spent the summer in rehab and went from a walker, to a four point cane, to a cane - which I still use. I also have burning pain from my waist down - mostly on my thighs - like a chemical burn. I have really weak legs. Six months later I went to a teaching hospital and repeated the MRI. It "lit up like a Christmas tree" and I was diagnosed. I've been on Betaseron ever since. I had one more attack last summer and lost control of my bladder - from urgency. I developed more severe spasticity in my hamstrings and I take Baclofen for that still.

 

I am so discouraged almost every single time I'm with or talk with friends and family. IF they ask about MS - which is rare - the questions are along these lines:

 

"Have you been to so and so homeopathic or naturopathic dr? I think that could really cure you, since your shots aren't working." "Medical dr.'s treat the symptoms, so and so cures your body."

 

"Why aren't you better if you have relapsing remitting MS?" "Aren't you supposed to get better?!" or "Are you better YET?!!"

 

"So and so has MS and she works out hard weight training every day and is doing great now- shouldn't you try that?"

 

Or my favorite which I have heard more than once!!!, "My doctors tried to diagnose me with MS too, but I cured myself with the Hallelujah diet or gluten free diet." (I know from this message board that it isn't like dr's are beating down our doors to TRY to diagnose us with MS and we must stand firm and resist!!).

 

The message I get loud and clear is that I'm doing something wrong. I should MAKE MYSELF completely well. That MS shouldn't affect my life in any way. Now, I don't even talk about MS with them. My husband said I just need to be honest and say I have a lot of pain and have to conserve my strength.

 

They aren't really asking how I'm doing though - just offering ways to "fix" me.

 

We go to a large church and I've stepped down from involvement over the last two years. I conserve my energy to take care of our 4 children and home. No shopping, going out with friends, having anyone over, church activities etc. It's a different life than I used to have, but it is peaceful and rewarding to me. My husband and children couldn't be more kind and loving - so I'm thankful for that. I'm just becoming a hermit - I really dislike getting with anyone else besides them!!!}

 

I hate that too. I get all kinds of unsolicited advice on how to "fix" myself. I also have slacked off on all the things I used to do and just spend time with family. We took the kids to the zoo a few weeks ago and I kept stumbling and such. It was horrible. I just sat down and cried. A friend told me (who has another neuro disorder, same age) to use the electric carts. I balked and she said "I know it is hard, but you have to save your energy for what you can. If it makes you a better mother and keeps you healthier, who cares how others will look at you?".

 

I am so newly diagnosed (just got my official diagnoses Wednesday) that I have a lot to learn. However, I have "known" since september that this was my probably diagnosis and have come to terms with it. If you want to know why an official DX took so long...it was my fault. I didn't want to have my LP done but finally decided to pull my head out of the sand and do it.

[Chris in CA]

Thank you for your post, they aren't sure yet - they are doing an MRI in 3 weeks. She is a school teacher and wanted to wait until school was out

I think they are hoping for Type 1, but I'm not sure,

[Chris in CA]

wow, it is amazing that diet could help so much - that gives me hope that maybe this can be managed without so many drugs -

I'm hesitant to give advice right now as I am totally ignorant, but when the time comes I'll mention the saturated fats to her. She eats very healthy now and is very fit

[Chris in CA]

Thank you, I only think of the cases where complete debilitation has occured - thanks for letting me know it doesn't have to be that way.

[Chris in CA]

This is what worries me most - I'm sorry your mom is in this condition.

I didn't know they treated MS with chemo, could you elaborate?

[Chris in CA]

Wow, thank you for this post - I don't want to make those same mistakes. I want to help so much,that I could easily have said many of the things in your post without realizing the implication being made

thank you again

[HeatherLynn]

There is also stem cell treatment that has been very successful. I know a girl who went to Brazil to have hers done and she is out of a wheelchair now.

[Chris in CA]

I don't know what has happened above - I keep clicking on 'quick reply' and my post seems to be randomly put elsewhere - I'm sure it is my fault - I just want to say - thank you to all of you who have/will pray and for sharing your stories and advice. I'm going to call her back today and just tell her that I'm here for her whatever she needs - I'll hold off on advice for awhile.

This is just so mind blowing - thank you for responding to my post

Chris

[Spy Car]

LNC, I feel your pain because that is exactly what my mom has gone through. Everyone has the cure that if she just did this, she'd be healed completely. If that were the case, then there would be no more MS because there would be a cure.

 

Melissa, the proponents of the MS Recovery Diet (for example) make it quite clear that their approach does not cure MS. It doesn't.

 

What they aim to do is avoid the cascade of effects that occurs when a person consumes a food item that is akin to an allergen. Because the immune response leads to damage to the myelin sheath (the insulating layer that surrounds nerve fibers). It is when the myelin layer breaks down that the bodies of MS suffers in effect "short-circuit".

 

The medical science that shows the link between allergic-type response, and the destruction of myelin is very well laid out in Ann Sawyer's book.

 

It is no miracle cure. Just a way to keep symptoms to a minimum. And to extend periods of remission. And there are standard medical explanations for every aspect of "why" this approach seems to be so effective in mitigating the symptoms of MS.

 

Bill

[Chris in CA]

thank you for this post - I truly believe diet is so powerful to our bodies, I want to get this book - thank so much for the link as well

[Jenny in Atl]

:grouphug:

[ekarl2]

My best friend was diagnosed with MS about 4 years ago. She's 32 now. She was medically retired from the Air Force. Since this she's had her first child and is still working part time. She has a little trouble with her legs and a little fatigue, but she travels, parents, parties, and loves and is doing fine.

 

T

[mommyto3]

This is what worries me most - I'm sorry your mom is in this condition.

I didn't know they treated MS with chemo, could you elaborate?

 

I didn't want to discourage you with my post, but did want to let you know about the realities of the disease and that some people don't fare as well as others. The http://www.nationalmssociety.org/index.aspx has some great information. This comes from their website.

Can MS be cured?

 

Not yet. There are now FDA-approved medications that have been shown to "modify" or slow down the underlying course of MS. In addition, many therapeutic and technological advances are helping people manage symptoms. Advances in treating and understanding MS are made every year, and progress in research to find a cure is very encouraging.

 

 

Any of the treatment options, even natural stuff, only helps to manage the symptoms and try to keep relapses from happening.

 

My mom has been on betaserone and copaxone, both separately and combined. She is also on other meds like topomax, nuerotin, vicodin, and valium. Her dr has been suggesting chemo for awhile now, but she's been putting it off because she was nervous about the side effects. But in December of last year she started progressing worse, affecting her mental stability, and her dr insisted on the chemo. The other drugs just weren't helping enough, although she is still on them. The idea behind the chemo is that it will kill off the immune system that is attacking her brain. That is essentially what MS is, the body attacking itself. The good news is that the second round of chemo has helped to relieve some of the symptoms! It's been the first time in a few years that she's had any of the symptoms reverse. It's been mainly with her eyes and she's a little bit stronger. We're just praying that the two biggest side effects don't happen - heart damage and a form of lukemia.

 

Anyways, the most important thing with MS treatment is starting as soon as possible. This is because the treatments don't typically reverse the damage that's already been done to the brain, but it can help prevent further damage.

 

I would say the most important thing you could do for your sister is to be supportive. Listen to what she has to say. Ask about dr's appts. Truly be concerned, which I'm sure you are. Try to avoid giving too much advice because there is so much misinformation out there. One person from church, well meaning I'm sure, tried to sell my mom protein shake powder because it "could cure anything". LOL Read up on the disease and learn as much as you can. If she does get a confirmation of MS, you'll also have to adjust to a new life with things she can and can't do. That has been the hardest thing for me personally. Especially when it comes to my kids, I just wish she could do more with them. And me, it's hard when she's too tired to hang out shopping. And she can't drive so she can't come visit me, I always have to go to her house. It's the little things you don't even think of that are an adjustment.

 

Anyways, I'll be praying for your sister that maybe the MRI will come back with a different conclusion. And that if it doesn't, that she will be one of the lucky ones that doesn't suffer as much. And that whatever treatment option that is chosen does help.

 

Spy/Bill, very interesting. I'd be interested in checking out her book. The National MS Society states that there is no evidence that any environmental allergens play a part in MS. Maybe that doesn't include food? Even so, while it may help some - which if it does that's great! - it wouldn't be effective for those who don't have those food allergies. Anyways, thanks for the info.

[Rosie_0801]

I read a snippet in "New Vital Oils" by Liz Earle about a woman diagnosed with MS taking a bunch of oil supplements to reduce the symptoms. Check that out, maybe? Every bit counts, huh?

 

:grouphug:

Rosie

[Spy Car]

Spy/Bill, very interesting. I'd be interested in checking out her book. The National MS Society states that there is no evidence that any environmental allergens play a part in MS. Maybe that doesn't include food? Even so, while it may help some - which if it does that's great! - it wouldn't be effective for those who don't have those food allergies. Anyways, thanks for the info.

 

I don't know what the technical difference is between "allergenic" foods and foods that cause an immune response in people with MS, but if memory serves, there is a slight "technical" distinction. But the foods that cause the negative response can be identified though medical tests (showing a rise in antibodies), as well as from common-sense listening to ones body.

 

And the ones I mentioned earlier, gluten, eggs, dairy, legumes, and yeast, evidently cause problems for most MS patients

 

I'm a pretty "skeptical" person. Especially when people want to sell "miracle cures". Other than the book itself, Ann Sawyer isn't "selling" anything. No therapies, no supplements. Nothing. And it is my very strong sense that she really wants to help people, the way she was helped. And we talked with a large number of people who were helped by following her method and eliminating foods that caused immune responses from their diets.

 

No cure. But some people when from being bed-ridden or being wheel-chair bound to leading active lives. And for some, they were less impaired and the improvements were less "dramatic". But all felt a substantial improvement in their symptoms.

 

I was impressed. So I put it out there. Make your own judgements. I liked that the medical science explaining the "why" this diet helps is made very clear. And there is nothing "dangerous" or financially risky in the approach.

 

You do have to eliminate some pretty common foods, and that could be a royal pain. But if it works the way people say it works, the inconvenience might seem pretty small vs living with the debilitating effects of MS.

 

ETA: I searched and discovered Ann Sawyer has a website now, which includes many articles and a forum. All the basics of the MS Recovery Diet can be found there.

 

Take a look. Be skeptical. See if what they are saying makes sense to you (and here I mean the "royal you". All who have loved ones, or anyone with MS themselves). There's nothing to lose.

 

http://msrecoverydiet.com/

 

Bill

[CactusPair]

I am sorry to hear of your sister's dx. It is really hard news and there is often a period of grief, fear, and anger that follows.

 

I have MS, dxed in 1996 at age 27. First symptoms back in 1989 at age 20. I'm 40 now and doing well.

 

How did they dx her without an MRI yet? That is usually the way they tell for sure.

 

I do think diet is very important, but I would definitely use meds., too. I stayed off meds. for 11 years. I did very well with minimal disability and relapses and followed a low-fat, MS type-diet. The diet may or may not explain why I did so well for so long without meds.

 

But I finally did have a *big* exacerbation with some lasting damage and the MRI at that time revealed years of silent progression. You can accumluate lesions in the brain and spine even though you are not symptomatic. The MS drugs, though not a day in the park, help to keep the number and size of lesions down and slow progression. This is very important in the long run, something I did not know before.

 

About the meds....If your sister does indeed have MS and wants to use the MS drugs, tell her to take a bit of time and do as much research as possible to chose the right med for her. Each person has different things they want to consider and each person responds differently to the meds.

 

Sometimes drs. don't tell you everything you might like to know when considering a med. For example, sometimes the interferons cause deep depression. Not in all or even most patients, but it does happen. I was depressed before beginning the meds, so I asked my family dr. to prescribe an anti-depressant before going on Rebif. It really helped a lot. My neuro refused to prescribe the anti-dep., but I have no idea why. He did not discuss the possibility of depression with the meds. either. I had to be my own advocate during a very hard time, which made things worse.

 

Another thing my neuro did not mention is that Copaxone, another MS drug, can cause permanent tissue scarring at the injection site in some patients. It doesn't happen to all or even most patients, but it does occur in some. The scar is a like a dent or crater, about the size of a quarter.

Many people use Copaxone without problems, though, and prefer it to the interferons bec. it doesn't cause the flu-like side effects of Rebif, Avonex, etc.

 

A tip: with Rebif, heating the injection site with a warm wet cloth helps a lot more than icing in dealing with pain or site reactions.

 

Also, a lot of people talk about the flu-like symptoms with the interferons. I was really afraid, but the side-effects, in my case, were more manageable than I thought they would be.

 

Please feel free to PM me if you have any questions or just want to chat.

MS is a hard row to plow, but many, many people do ok with it.

 

oh, if your sister struggles with the heat, a cooling cap or vest may help her tolerate the outdoors better. Rest and pacing oneself is extremely important, too.

 

If fatigue is overwhelming, there are meds. that can help with that, too. I took Pro Vigil last year for the first time and it was truly a life saver.

 

Again, i'm very sorry about your sister's preliminary dx. I will keep her and you in thought.

[Nestof3]

Yes, Chris. I will be praying as well.

[mommyto3]

I don't know what the technical difference is between "allergenic" foods and foods that cause an immune response in people with MS, but if memory serves, there is a slight "technical" distinction. But the foods that cause the negative response can be identified though medical tests (showing a rise in antibodies), as well as from common-sense listening to ones body.

 

And the ones I mentioned earlier, gluten, eggs, dairy, legumes, and yeast, evidently cause problems for most MS patients

 

I'm a pretty "skeptical" person. Especially when people want to sell "miracle cures". Other than the book itself, Ann Sawyer isn't "selling" anything. No therapies, no supplements. Nothing. And it is my very strong sense that she really wants to help people, the way she was helped. And we talked with a large number of people who were helped by following her method and eliminating foods that caused immune responses from their diets.

 

No cure. But some people when from being bed-ridden or being wheel-chair bound to leading active lives. And for some, they were less impaired and the improvements were less "dramatic". But all felt a substantial improvement in their symptoms.

 

I was impressed. So I put it out there. Make your own judgements. I liked that the medical science explaining the "why" this diet helps is made very clear. And there is nothing "dangerous" or financially risky in the approach.

 

You do have to eliminate some pretty common foods, and that could be a royal pain. But if it works the way people say it works, the inconvenience might seem pretty small vs living with the debilitating effects of MS.

 

ETA: I searched and discovered Ann Sawyer has a website now, which includes many articles and a forum. All the basics of the MS Recovery Diet can be found there.

 

Take a look. Be skeptical. See if what they are saying makes sense to you (and here I mean the "royal you". All who have loved ones, or anyone with MS themselves). There's nothing to lose.

 

http://msrecoverydiet.com/

 

Bill

 

Thanks for posting the site. Going to check it out now. I'm just skeptical because of what my mom's drs have told her. And more than one dr. Plus, I know she has tried some stuff. Trust me, if she thought any of it would help at all, I'm sure she'd do it. I'll check out the site and maybe mention it to her.

[gevs4him]

Praying for your family :grouphug:

Lisa blessed wife to DH of 23 yrs

Two special gifts DD 18 :Angel_anim:, DS 6 :gnorsi:

[mommyto3]

For whom will it work?

A good research study has never been funded to explore all the aspects of this treatment, so we don’t know for sure. Over the fifty years that this diet has been evolving, especially in the present form, the recovery diet seems to work for everyone who really follows and works with it. How quickly improvements are seen is highly variable. The road is bumpy, but if you stick with it and listen to your body, you will heal and recover. Most people return to full functioning with no lingering symptoms after a few years. It takes time, persistence, patience and determination.

 

This is taken from the site posted. I don't like the fact that they imply that it seems to work for everyone and that if it doesn't work, you're not following it correctly. I'd be curious to know if there are any neurologists who are currently doing diet studies regarding MS.

[LadyAberlin]

My dad has MS. He was diagnosed when he was 44. He is fine. He takes his meds. My parents have adopted 7 children since then. He and the boys go dirt bike riding and he travels all over the world with work. I'm 29 and 2 yrs ago started having MS symptoms. I wasn't diagnosed with it because we didn't pursue it. My dr decided to have me checked for food allergies because MS is frequently misdiagnosed when it really is something like food allergies or celiac. I have multiple food allergies and if I stay with a very restricted diet I'm symptom free for the most part. I'm thinking though I will start trying to add some things back in to my diet soon. I've been off of stuff for so long, sometimes the allergies will go away. I haven't been brave enough yet to try.

[LadyAberlin]

What are cooling vests and cooling caps? I have issues with heat it sound like something I should look into.

[Spy Car]

This is taken from the site posted. I don't like the fact that they imply that it seems to work for everyone and that if it doesn't work, you're not following it correctly. I'd be curious to know if there are any neurologists who are currently doing diet studies regarding MS.

 

I think you are mis-reading this. I watched extensive interviews with Ann Sawyer. I think she is trying to be very upfront that a good research study has never been done, and that much of the evidence for the diet is "anecdotal" and based on her experience and the experiences of many others. This strikes me as being "honest".

 

The reference to "really following" the diet is a recognition that this is not an easy eating program to follow in modern life. No eggs. No legumes (no beans, or soy beans). No gluten (so no wheat products). No dairy. No yeast. Plus what-ever individual "triggers" one might have.

 

This is hard. Very hard. What she is saying is that if people DO avoid these foods, that most people have greatly reduced symptoms.

 

She is not trying to "blame the victim". She wants to help people, but would be the first to admit sticking to this kind of diet is not easy. But if you don't follow it scrupulously you don't see the benefits.

 

It is because this "diet" is not built around the idea that if you eat the right nutrients your body will fight disease. It's predicated on the idea that certain food cause an immune response in the body. The immune response damages the myelin. The damage to the myelin leads to MS symptoms.

 

So the inflammation events need to be stopped by not consuming foods that trigger an immune response in the first place. It's cause and effect. "Doing it right" simply means avoiding "trigger foods". That's not the kind of commitment everyone is willing to make. And understandably so. It wipes out much of the modern diet. It would be very hard, and take real commitment. And you can't "fudge it".

 

And there are no good studies.

 

There are just real world people who have seem to improve as a result of this elimination diet. Some very dramatically. So a person has to weigh the evidence as best they can. With a mix of healthy skepticism and an open mind. And ask if it makes sense to them, or not.

 

I'm a film-marker, not a doctor. And I'm very skeptical by nature, especially in terms of medicine and "claims" for unconventional (unproven) treatments, because I recognize there are people who feed off the fears and hopes of the desperate. Plain truth.

 

Ann Sawyer strikes me as the very opposite of that. She wants the information that has helped her, and many others out there to benefit others. Like I said she's not "selling anything". Much of the information in her book is freely available on her web-site. And she is a person of science. While there are no good studies there is a medical model (a hypothesis) for why and how this elimination diet works.

 

I'm not trying to convince anyone. I just know MS can be pretty devastating. And this is a low-risk low-cost form of treatment that seems to be successful in reducing symptoms.

 

You are right to question. Don't stop being skeptical. But take a deeper look. If at the end of the day it doesn't make sense to you, all you've lost are some research hours.

 

I was really impressed by Ann Sawer and her story. And the medical explanation for why it seems to work. And I'm not that easily impressed. If I had MS, my first move would be to find a great physician. The second would be to give this solution a chance. That's *me*. Not anyone else.

 

I just can't hold back information I'd use myself and feel right about it.

 

ETA: I looked at the forum. The stories I'm reading there are pretty consistent with those I heard form people while working on Ann's story. Very strong anecdotal support that this method helps people. It's worth at least taking a look.

 

Bill

[Spy Car]

My dad has MS. He was diagnosed when he was 44. He is fine. He takes his meds. My parents have adopted 7 children since then. He and the boys go dirt bike riding and he travels all over the world with work. I'm 29 and 2 yrs ago started having MS symptoms. I wasn't diagnosed with it because we didn't pursue it. My dr decided to have me checked for food allergies because MS is frequently misdiagnosed when it really is something like food allergies or celiac. I have multiple food allergies and if I stay with a very restricted diet I'm symptom free for the most part. I'm thinking though I will start trying to add some things back in to my diet soon. I've been off of stuff for so long, sometimes the allergies will go away. I haven't been brave enough yet to try.

 

I think the supposition is that MS and things like Celiac disease share similar auto-immune component. In the case of MS the autoimmune response destroys myelin. But proponents of the MS Diet do believe foods, such as gluten (which triggers an immune response in people with celiac disease) play a very similar role in triggering MS symptoms.

 

And the "trigger foods" in MS are also those that cause commonly factor in food allergies. And the response can be measured by the production of antibodies after the consumption of these foods.

 

Bill