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!

[HVAC]

Stopping DMDs is very risky business. No two cases of MS are the same. There is inflammation which comes and goes with it symptoms and there is nerve damage. Nerve damage happens silently and once a nerve is cut there is no return. Damage can happen with out any symptoms. So far the DMDs have been proven to slow progression.

I have a progressive form of MS and stopped taking DMDs. I had no real outward signs of MS for 47 years. Everything was invisible to others. Now it is catching up to me. If there was a DMD I could take that would work for me I would take it.

If you want to go off all DMDs you have to ask yourself if you end up in a wheelchair can you live with your decision? Of course you may not end up progressing because of your disease does not progress or you may take a DMD and still progress. It is all benefit/risk but you truly have to be aware of those risks. No doctor can tell any of us what our particular MS will do to us. Since the DMDs have been around progression has slowed and there is a lot less disability in the MS world. There are many DMDs to try these days. This is a discussion you need to have with a Specialist. The drugs all have side effects and there are no guarantees.

There is no right answer you just have to be able to live with the decision you make for yourself.

Giving up your DMD feels like going down hill with no brakes what so ever. It is a scary feeling. I learned to accept and live with my choice but it was not one I took lightly. I had to grieve for awhile.

Alex

[kariebearie]

Hi guys, I'm so confused, been on and off Avonex for 11 year 3 pregnancies in between. For the most part been on it, I have a brace on my right leg, and a power wheelchair for major things like walmart mAll, Busch Gardens ETC. I met someone who was 69, and was diagnosed at the age of 19. Never took any meds, and she is still walking. I'm debating stopping avonex due to the side effects, extreme fatigue, headaches, not to mention I also have Chrohns
disease, and 3 young kids. I'm always in bed. I didn't take my meds for a whole week. Felt amazing, I cooked cleaned and took my kids places, and just felt alive. This is the issue, should I make it better "quality" time, as opposed to "quantity" of time? Or just stay on
the meds? Thanks for the help........... want to hear more from people who have been off mds for years and years, and see if the regret, or are satisfied, same with family members of friends in same postion.

[opie74]

You and I and risnerrose can start all of this together and compare notes.  

[GrannyJo6]

You know, it really does help make you feel like you are being proactive and have a real part in your care when you are brought on board in making the decision about meds. My nurse practitioner is very good that way, too. She never says "you have to" but always suggests or asks if I would be willing to try this or that. What a change from my mother's day when the doctor was right up there next to God and you never questioned anything they said.

[Lulu54]

This discussion has provided a lot of really good material about DMD's and their role in treating MS aggressively.  

Please don't get hung up too much on selecting the "correct" drug - I believe the studies and long term use have shown that the end result of all four are pretty close to the same.  A large part of this selection is also based on personal preference (daily injections, versus further spaced shots), doctor monitoring, and other factors.  There is no one correct drug - if there were we wouldn't be given all these choices.  

I'm gathering from the discussions here that most MS doctors are offering their patients a couple options for drugs and then leaving the final decision to the patient. It is nice to know we have some say in our treatment, right?  

my best to all of you,
Lulu

[JennyO63]

Yes, I feel as if we are family as well! See, something good does come out of this dreaded disease!! Would you have had all this support without MS? Maybe~maybe not. Oh, if I could only remember with my Migraine brain the author of one of the best and easiest books I have read on MS! The book is called "LEAN ON ME", written by a multiple sclerosis patient. She stresses, if you don't feel 100% comfortable with your doctor's advice, please seek out a second and third opinion on your question! It's your body!! One of my MS buddies in PA has my copy. She was on Montel Williams talk show (the author of Lean on me).

                          If Christopher Reeve(superman) didn't give up nor lose hope,
                                      neither can any of us!!!!!!!!!!

                           With love & caring feelings sent to you from cyberspace,

                                                 JennyO63

(My worst effected SPMS patient quote" live life day by day "with MS)