Again, I choose no treatment!

[Auspiciousme]

Hello everyone.  I came here a while ago and asked what made you choose MS treatments.  You were all very kind and gave me your thoughts about MS treatments and meds.  I must say, I was leaning towards MS treatments after reading everyone's posts.  Since last week I am experiencing a mild attack (right leg hurting and all tightened up plus skin pain & dizziness).  On Thursday I saw my doctor for my annual check up.  He did the normal checks, walking on a line and touching this and that...,etc and everything was normal.  He asked me if I was feeling bad enough to get on steriods and I said no.  Then I discussed starting treatments with him and asked him my questions.  He said the meds are pretty much the same and I get to choose which one I want based on the amount of shots I am willing to take.  He said the studies have been only for two years on each person and the meds show reduction in the number of attacks MS patients get but they really haven't pooven that the meds would do anything as far as the course of MS goes.  I told him that since I was diagnosed two years ago, I haven't had any major symptoms and I really don't like taking harsh meds and he said that in that case, I shouldn't!  He said if my symptoms and attacks are not bad enough to interfere with my day to day life, then I shouldn't do the treatments.  I asked about natural treatments and he said there is no proof that natural treatments have been helpful.  That night, I attended a MS Society seminar called MS & Meds which was about MS and available treatments.  The speaker was a retired Nuro and he spoke about MS and it's effect on nerves and then all the available meds.  He didn't really explain, how the medication helps the process of MS.  He did say that it reduces the number of attacks.  He also said that they all have side effects but he really didn't get into it.  When I told him what my doctor had said about not getting treatment, he was surprised and said "he should get his head examined!!!"  He said it is essential for all MS patients to get treatment.  But the funny thing was that every time he said what MS does to you, he siad "well, whether you take meds or not, you will eventually do this or that and you lose this or that".  I think all the people that were there were on different treatments.  & I would say half were using some kind of assistance for walking.  The few that I talked to had major reactions to some meds.  A young man had brought an artical about a MS patient that just had died because of PMI and Tysabri and he said he was getting off all treatments.
So, I came out of the seminar with anxiety and fear.  I was feeling all kinds of things.  What should I do?  Meds or no meds?  I know MS patients that are on treatments and are doing poorly and I know MS patients that are not getting treatment and have altered their eating and excercise habits and are doing wonderfully.  The side effects seem endless when I read about each medication.  After taking years of these meds, what's left of your liver and kidneys and ...?  How do we know that some of the symptoms a lot of MS patients feel after years of using these drugs aren't because of these side effects? When you drink lots of alcohol, you throw up, right?  What does that mean? Doesn't that mean that you have intered "poison" into your body and your body is reacting?  So how come we don't think about how our body reacts when we enter all these chemicals in it?  
I want to say that I am not against meds at all.  I know that sometimes you have to take medications whether you like it or not regardless of what side-effects they have.  & I respect the decision that some of you have made to take meds.  I just feel like meds are not for everyone.  In my case, because I am not feeling so bad, I think I can try to create a healthy invironment in my body so my body can heal itself or at least not get worse.  For now...I am choosing no treatment and I am going to follow Ann Boroch's treatment and see what happens!
I think it's easier to choose medications rather than completely changing our life and that is one of the reasons we choose meds.  Our society prefers "easy" over "natural".  I am one of them...I know!  I much rather take a pill for my depression rather than excercise and avoid certain foods that would help me with depression, so I do!  But I've tried dieting before and I felt great (I am talking about Ann Boroch's MS diet not losing weight diet...(although god only knows how many times I've tried the losing weight one too!))..and it was too hard so I stopped and now I feel more symptoms.  I will try again.  If I get worse, then I will try meds...but somehow, my gut is not comfortable with meds right now...even if the healthy diet doesn't cure MS, at least my body will be healthier and if I have to start meds, I can at least tolerate them better, no?
Is anyone willing to try the diet with me?  Or do you all think I am nuts, in deneil or stupid?  Honestly, do you think eating right, excercising, meditating and taking vitamins could hurt your MS?...Would anyone be my partner to start this diet together?  (I am not asking anyone to stop treatment...at all.  That is something you & your doctor have to decide....I am just saying that could natural treatments work too?)  Anyone with me?
I am sorry, if I talked too much!  I could go and do my own thing and not bother writting here, but I feel like I should tell people about how I feel.  Maybe someone out there is feeling the same and is scared just like me and wants to explore something new?  Again, I respect everyone here and their decision whether to take treatment or not.  I am one of you...and I am afraid of what future will bring for us.  I do wish everyone the best...and I hope whatever treatment you choose really works for you.
I will keep you posted and if I am making a mistake now, I will admit it later, I promise!

[Auspiciousme]

Hello there,
Thank you for your post.  I have seen Ann Boroch myself.  She is in her forties and she got into what she is, because of her own MS.  I have read her book and in her book she explains how awful she was hit with MS at age 24.  She was almost parapeligic but her worst symptom was not being to swallow properly.  She is super nice and super cool!  & although her visits are expensive, she gives you a handout of where to buy her recommended vitamins for less than you could buy from her...so I know she is not just doing this for money.  I actually was supposed the start Avonex, a few months after I was diagnosed.  The night before my appointment I met a lady in my gym that was using her wheelchair to walk in the gym, work out and then she would sit in her wheelchair to leave when she was tired.  I started talking to her and she said she was in wheelchair for two years and she was getting better because she was seeing Ann Boroch and was under her care.  That is how I met Ann.  I must admit that I felt great while I was on her diet.  
I agree with you that we are all in limboland!  I totally feel like I am.  I have no idea what to do and that is why I think maybe now that I don't have horrible symptoms and feel normal, I can start with diet and excercise to begin with.  My doctor agrees with me.  He said that I should wait as well which is shocking to MS community!  I can't get a straight answer from any doctor!  None of the ones I have seen, actually explain MS, explain the drugs, pros and cons.  I have seen three and all of them told "me" to choose my drug.  How?  What education do I have to choose a drug for myself?  This is one the reasons why I am so scared of drugs and choosing treatment...If a doctor would give me a definite answer on how the drugs work and what it can do to help me, maybe I would be more confident in choosing to treat my MS.  They all say every person is different and studies show 30 to 40 percent improvement.  None of them even tell you how you can help your body naturally (in addition to drugs).  Is it even possible that what we eat has nothing to do with our health?  It doesn't make sense to me.  Ann's thing is that our body has the power to heal itself.  If we stay away from what's bad for us and give our body the nutrients it needs, our body can heal.  Of course the power to heal is different depending on what stage of your disease you are in.
I am gonna try it again and see what happens.  If I get worse, then I'll do the drugs.  At least that way I know I tried all my options.
By the way, I think swimming is great.  When I had my 1st attack which led me to my diagnoses, I took up yoga and swimming.  It was great & it really helped me.  Yoga, Thai Chi and Pilaties are great for core training which helps with MS patients.
Either way, I hope you don't have MS and I hope you feel all healthy soon.  God Bless.

[essdipity]

I'm wondering what's so magical about "natural." Snake venom is natural. The law of the jungle--kill or be killed--is natural.

A good diet, regular exercise and generally healthy living are always a good idea. They can only benefit you if you have MS, or even if you don't. But there is absolutely no evidence that your disease will be lessened by following that way of life. There will always be people claiming that their way has produced miracles, and some of these people are very sincere. Others are charlatans looking to grab your money when you are at your most vulnerable. So it's a case of caveat emptor--let the buyer beware.

For my money, I have to go with the odds. I have to consider that no MS med is perfect, and all have side effects, but the "front effects" are the bottom line. By that I mean, how well do they work compared with other methods. The answer is that they have been shown in many scientific studies to be effective. Not perfect, no guarantees, not for everyone, but still on balance they do work. They at least slow disease progression in many instances, and nothing else out there does that. Moreover, the 4 CRAB drugs do not harm the body and are not dangerous.

Adults have the right and the duty to make their own health decisions, and I'm not suggesting that you have to choose the path I choose. I'm speaking more to those who are just becoming familiar with MS for whatever reasons, and are seeking accurate information. Some will be sitting on the fence, unsure, and thus make no decisions. Meanwhile time is passing, and the opportunity to treat their MS early, when the meds are most effective, will slip away. We have had so many posts here by people who either made the wrong decision or didn't even get to make any decision because of lack of diagnosis. I hope that some of these members will add to what I'm saying, and maybe explain how much they feel now about these matters.

For me, I know that few things are 100%, including the MS drugs. So I have to get the best information available, do Avonex with whatever side effects it brings, and hope for the best. Though I rely greatly on science and logic, I'm still open to other paths, but to supplement and not replace the best chance I have for the least disease.

ess

[CareBayer]

Today I was watching Unsolved Mysteries and it had a clip about this man named Edgar Cayce. He was a man who lived in the 1920's. He gave deep indepth hypnosis readings to people with various illnesses. I became intrigued and decieded to look him up. When I did looking on a site dedicated to him and his readings. I looked up MS on there and read what he said about the disease, the cause and treatments. This is the link.

http://www.edgarcayce.org/health/medical_overviews/multiple_sclerosis.asp

[opie74]

You sure have gotten a reaction from your post......

I was recently Dx.  I have 30 lesions in my white matter.  In 2001 I had 19.  The doctors said that they were caused from Migraine.  Now with 30 and the onset of symptoms, my first visit with a new Neuro gave a probable Dx.  The MRI that he ordered showed 30 leisions.  (I had one the previous year, but I had a bad Neuro)

Ok, so the new guy sends me to a specialist for a second opinion.  Weeks befor the blood work was back he spent 45 minutes discussing treatment options.  I knew that I hadit at that point.  He quoted statistics and more statistics (thank God that I am a math teacher).  Basically, as Quix has stated in other threads, lesion load is not directly related to symptom load.  I am living proof of that. (19 lesions for years with almost no symptoms). HOWEVER, lesion load without treatment is definitely linked to the speed of DISIBILITY.  I don't mean light weight stuff, serious disability.  The specialist quoted to me that if you have a significant number of lesions , 19 was significant, and you had significant increase in lesion load, 11 was significant, that he could predict disability on a time line at 5, 10, and 15 years.  

I am not saying all of this to scare you.  I am right there with you.  I bowed out of a clinical trial because I was afraid of the side effects.  I am due to start beta seron within the month.  Am I scared, H@## yes!  Will I do it, H@## yes.  After the specialist speaking my language, cold hard numbers, I can't risk it.  I saw my local Neuro on Friday.  He looked me strait in the eye and said "You do not have time to procrastinate.  We the lesion load that you have, and symptoms beginning to show up, you must act now."  I told him of my fear of the trial and he said "Don't do it."  But start one of the meds ASAP.

I think that the diet is a good idea IF done with treatment.  I don't know you lesion load, but if it is anything like mine, or is increasing as fast as mine, get the to the needle!

Keep thinking!  I am glad that I am not alone in being affraid!

[GrannyJo6]

I'm sorry you are so fearful!  I'm guessing most of us with MS are fearful from time to time about the course of our disease and the unpredictability of it.

I also have "benign" or silent MS. You would never know I have it. Most of my symptoms are pretty lightweight - odd sensations, etc. However, the odds of it progressing or of having a major relapse are more than I want to gamble with.

About a year ago I changed my eating habits and diet to one that is supposed to help with inflammatory disease and lost 25 lbs and feel great! (See journal entries in profile.) I have not decided to abandon the Avonex but see it as an adjunct to the "natural" way I am trying to live. I exercise regularly and I know I am doing all I can to fight this thing. And maybe for me, that is the most important thing - I am being proactive and doing everything I can to keep myself healthy.

I'm concerned about you. Like Quix said, sometimes you just have to step out in faith, believing that your doctors are recommending what they think in is your best interest. Perhaps another opinion would be in order?

At any rate, you must do what you feel you must do, and if you aren't comfortable about taking meds, then nothing we can say here will probably sway you. I hope you see that you are in the minority here, though!  Best wishes for a healthy new year and keep us posted on your progress! Jo

[Lulu54]

this is quite the discussion to read  - I probably have had MS for 20 years, looking back.  It only became bothersome enough this year for me to see a doctor about my symptoms.  I got my dx in Sept, and was told there was no choice for me but to get on a DMD immediately.  If I had started drugs years sooner, who knows where I might be with my symptoms.  Perhaps I could walk a straight line, stay out of the bathroom longer than 60 minutes at a stretch, and not experience the foot drop that I have on exhaustion.  

My hope with taking copaxone - a daily injection - is that these will be all the symptoms I have and nothing more will be added to my list.  This leap of faith is a hard step to take,but I honestly don't believe I have a choice if I want to stay as healthy as possible.

In addition to the DMD, I also have changed lifestyles and include regular exercise into my day.  After three months I feel somewhat better - I can only assume that it is a combination effect of the drug and exercise and diet.

Part of the reaction you are hearing from this community is because so many of these people are desperate to get out of limbo and secure a diagnosis that offers hope to slow their diseases with the inclusion of a DMD.  If they have MS, they will not hesitate at all to pick a drug and stick with it.  

It concerns me that your doctor would feed your concerns and fears with false information about the dmd's, their length of use proven to be effective, and otherwise encourage you to take a roll of the dice and chance your MS stays quiet. You said this was your annual checkup - was this your PCP or a neurologist?

Stay in touch,
Lu