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!

[sllowe]

Making a decision ushers in so much peace.  I wish this for you too.

I, too, was in denial.

Proud of you!
-Shell  

[Auspiciousme]

You guys are wonderful!  Thank you all so much for caring enough to post here and tell me all about your thoughts, experiences and opinions.  I have thought this over and I think you are all right!  I am going to do the diet and excercise and I am going to start meds!  As I had mentioned before in one of my posts, I have had my head in the sand for a while and it's time for me to accept that I have MS and I have to take drugs to help myself regardless of the side effects.  Hopefully modifying my diet and lifestyle will help me tolerate the meds better.  Eitherway, whatever will be, will be and I will do all I can to be able to walk to my son's wedding someday (he is 10 now!!!)...
Fear has stopped me long enough...It's time to face it and go on with my life.  Pitty Party is Over!
Thank you all my friends...I am so glad I came here & I am sure I'll be back with more fears and bad days but hey...that's life.  Some good, some bad...
Okay..now which med should I start with?!!!  I will start a discussion on that soon!

[JennyO63]

Please take in consideration that even chiropractic doctors like the one I see and is the dean of my school says there is a place and time for herbal therapy, but when the body's immune cells attack themselves like in MS, you need the best of both holistic healing grouped with prescriptionMS drugs. It is absolutely true that the earlier you start MS modifying drugs, the slower the disease robs your bodys functions. My holistic doctor is: Dr. John Kenny, dean of Northwest Health Careers here in Nevada. The body has tremendous power to heal itself. What I have seen all my life with my grandma, my friend now living in MA, and all members of MS Society Delaware Valley Chapter is exercise, nutrition, supplements, and prescription drug therapy keeps you able to walk up to ten years before being wheelchair and/ or walker bound. That in MS terms is a long time~10 years.

[JennyO63]

Please don't get me wrong. I did not imply that Beta seron is poison. The number one POISON that negatively effects MS patients is STRESS!!!!!  When you are in the first years of MS, please go online, get a list of MS medications and a printer. Print out all the drugs, google their side effects, and along with a doctor you can TRUST, bring what you printed to your next doctor/neurologist appoitment. My patients I care for in their homes have begged me not to let their families "put them away" in nursing homes/assisted living facilities. I see what goes on there, and unfortunately, what does NOT go on there, but SHOULD! So remember, whatever your course of action, you must play the hand life has dealt you to the best of your ability, and NEVER GIVE UP!! Check out (google)the Christopher and Dana Reeve foundation website. It has invaluable information to ANYONE facing disability. They even have a free library that the Reeve children (now grown up) run. If Christopher Reeve didn't give up, why should we?????

                         Respectfully & with caring,

                                JennyO63

[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

[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