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!

[Infinitespace]

All folks here would do well to regularly peruse the free NIH databases. There you will find an aggregate study from 2009/10 that disproves glatirimer acetate’s efficacy for anyone with MS at any stage of the disease course: yes, Copaxone does nothing. Further, in that database you may wish to read the disturbing research past of the latest alleged DMT: Ocrevus or ocrelizumab. This drug was first tried on RA sufferers, too many subjects died and the researchers suspended the study, then decided to try it on lupus patients who also died and developed kidney disease. So the drug co. ruled it out for lupus and are now aggressively marketing this substance to people with MS, the underlying thinking is that we can better tolerate the side effects. So, yeah, there is MUCH to consider before going on ANY of  these drugs. I am not surprised yet disheartened by the many fear-based posts here bullying people into taking questionably “useful”drugs for MS. MS is a very strange disease, poorly understood even by the best doctors. As others have said, this is a highly individual disease in terms of symptom presentation and disease course. Do your research. Think for yourself and do what feels like the best treatment option for you. You don’t have to obediently follow whatever drug your neurologist wants you to take. You also don’t have to be intimidated or frightened by others who challenge your medical choices. Including whatever the various doctors you consult recommend. You only have this one life. MS is such an identity and life thief. But you do still have this one life: Live it the way YOU want.

[GuitarRox]

Are you diagnosed with MS?  Hope we can learn from you and you can share your personal experience.

[HVAC]

Here is my problem with your doctor saying you are having few symptoms you do not need to be on MS drugs. MS damage can happen with or with out symptoms. So you choose not to use the drugs until you have symptoms. At that point the drugs should help slow progression but what ever damage and symptoms you have may not reverse. These drugs are designed to be taken at the beginning when you are not having the symptoms. This is a tricky disease you can go fine for years and then you can wake up one day and lose vision in an eye or not be able to walk or use your hands. None of us knows when that can happen or if it will go away.

I have permanent damage from MS symptoms that never will go away. I have double vision, cognitive problems, spasms every day, vertigo, slow walking. I got all this damage in the 60's before MRIs or MS drugs. If I could have avoided permanent double vision I sure would have.

Many people go to Neurologists for years with out many symptoms. Other people have relapses all the time. No one knows which catagory we will be in. These drugs slow MS they can't stop it. First we have inflammation which causes symptoms. Later we have nerve damage which is permanent. No one knows when we cross over.

The MS drugs are not like steroids they do not help symptoms. So a person may not use the drugs then one day they can't walk. They can't just start taking the MS drugs and walk again. The drugs may slow further damage but they will not turn back nerve damage.

Alex

[bepositive123]

Wow, all this info sure is helpful.  I am a 52 year old woman, diagnosed with MS in 2015. So far, I am going for an all natural approach.  It is scary to think of all the DMD's out there and all their side effects. My neuro basically said that there is no guarantees with either choice, DMD or no DMD.  It is a personal decision.  Hopefully there will better options in our futures.  

[armillariasolidipes]

I hope this message can reach you...I know you started this conversation many years ago.

I have had MS for a decade. Against the wishes of my MD and my DO, I have decided not to take any DMDs. I just don't think that I can afford some of the long-term side-effects of any of the DMDs on the market. I follow a regular course of turmeric supplements, omega-3 fish oil, occasional r-lipoic acid, do yoga 3-4 times a week, and drink green smoothies just about every day. I'm trying to cut eating so much fat...mmm fat. This research article is a good introduction to why I'm doing what I do, except that, of course, the research isn't conclusive (limited large-scale human studies): http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901236/

I am mostly A-OK. I would recommend that you ignore the pro-DMD haters and the pro-alternative medicine true-believers and just be true to yourself. Most people are followers and are easily swayed by black-and-white viewpoints. The truth is nuanced. :] Educate yourself as much as possible (but don't get too overwhelmed by the never-ending, exciting research). If you're still interested in a natural route, talk with people who treat their MS naturally...talk with as many people as you can! These are the people that give me confidence--not the haters that will tell me I'm crazy (even though it's none of their business). ;]

My other advice is try to find the root causes of your exacerbations. For example, if you suffer with anxiety, try to address the underlying issues through psychotherapy. Or maybe start a yoga routine (I like yoga because of it's mixture of exercise and meditation, and because you can modify it to your abilities). Protip: Studios are sometimes happy to give you a discount or do trades if you have a disability or chronic illness. ;] Last but not least, consistency is key in addressing chronic illness. <3 to you!!

[Pinkpoodles]

Hi
I am answering the original post in 2009 but hi to all others too! Thanx for sharing your story. I am trying to go paleo diet wise and I feel exactly the same as you about these drugs. Also the jcv Plm carry on makes me suspicious that I&#39;ve been given this illness in a vaccine and for that reason I will never touch another. I hope you are doing well and for everyone fighting this I wholeheartedly intend you to beat MS. Get back to perfect health and live carefree again. Love n hugs xx

[jjcase337]

I know this is pretty late reply, but I would say natural is when we don't munipulate plants and animals and think we will do just as well as out creator engineered them to react with our bodies. And no, im not that smart, hehe..

[HVAC]

Rassha,
  I think Tecfidera is a good drug. I w3as going to go on it myself but I can't because of another illness.

Alex

[kwarendorf]

Hi Rassha - Welcome to our group.

I think you are making a smart choice. The drugs available today are the best way to help slow down the progression of MS, in my opinion. I was initially diagnosed with SPMS, and although there are not supposed to be any meds available to battle SPMS, I choose to get RItuxan treatments to try and low MS.

We all have to make our own decisions and I think your's is a good one!

Kyle

[Rassha26]

I read the comments and am forced to think about the choices I made. I was diagnosed with MS in 2012 and decided not to take any drug and manage the symtoms. I'm doing ok without it but have few symtoms like fatigue, numbness tingling very often. The left side of my body has become weak and I convinced myself that with exercise it will become better but by reading above feedback I am convinced to try the new drug Tecfidera recently suggested by my neurologist. I do have to take blood thinner warfarin for the other issues so injection becomes a big ordeal...Welcome any suggestions...

[HVAC]

Understand MS progresses without symptoms. So if you decide to start treating your MS when you are having bad symptoms it may be to late. I do not treat my MS because I have Primary Progressive MS and it does not do as well with the medications.

I am a non drinker, non smoker. I do not use recreational drugs. I have a great diet and exercise. I have had MS for over 40 years. A few years back I was eating lots of kale, spinach, you name it. I started throwing up all the time. I had stage 4 Cancer. I have Cancer in 15 places. Diet and exercise did not help. I have bad genetics. The same with MS. I think everyone should be healthy but sometimes diet and exercise are not the whole thing. Now I need chemo.

We all make our choices with health care make sure you know the truth. When you get to the wheelchair it may be too late for Tecfidera. You need to slow the progression in the beginning of MS.

Alex

[Omar0814]

Hi,


    I am 37 years old, I have MS which I was diagnosed in 2011. I don't take any meds, I just changed my diet and started taking vitamins and minerals. I don't really have any symptoms of the disease except for the heavy leg feeling every so often. I do exercise moderately and drink a lot of fresh juices. I feel that you don't/won't need the medication if you are treating your body right, and by that I mean stop eating sugar, dairy, soy, oats, white foods meaning enriched foods. I actually am trying the gluten free diet now, wish me luck. Much luck to you all as well. God bless

[JGODDESS]

Hello  im JGODDESS for short. i was given the  bad  news  of  having MS.Im  not  happy    at all just trying to adjust to all this madness. my face  numbness , being unbalance and  joints hurting as i go up and down stairs. what scares me more then anything , Lord  jesus is  the med my doctor  put me on.TECFIDERA. It cause u  to loose white blood cells, and hot flashes.i have MS but  at the rate  i will inturn get some form of lupus or infection with the  lowering  of my white blood  cells. My meds  are expected to reach me tuesday   and its like  im waiting  for  a skeleton head with cross bones....I want to just  go slow   and not take  no meds  but as i read  here  this ms  will get worser if not treated.the  doctor said ive had at least 10 years already. some words of incouragement  would  go a long way  right about now...SEEKING  some  words to  help me ....

[Lulu54]

Alex has given some good advice.  The one thing I would emphasize again   is perhaps you need to look at a different DMD.  The interferons have the problem with flu like symptoms and depression, and for many people the side effects are worse than the MS.  

Welcome to the group and I hope you stick around and share your experiences and add t o the conversations.
be well, L

[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)

[Auspiciousme]

Oh my god!  You are so wonderful!  I think I have a new family!  A family that is there & fully understands what I am going through.  No judgement.  Wow...thank you all soooooooooo much.  You have no idea how much this means to me.  I found out that my Neuro is not board certified last night.  The speaker (doctor) at the MS meeting said that it is very important that I see someone who is board certified and sees lots of MS patients.  So, I am calling for another doctor for 2nd opinion for meds.  (as you recall, my doctor didn't insist at all for me to take meds)...I will see what he recommends...and then I'll get on them.  I am gonna be tough like you all!  Thank you all so so much.  

[GrannyJo6]

Oh, good for you! I am also very sensitive to even over the counter meds, and I have had very little problem with side effects with Avonex. That is the once a week dose, so I only have to take NSSAIDS once a week. I also have had depression and anxiety attacks and there has been no effect from Avonex. However, one of the side effects of the DMDs (at least Avonex) can be depression, so my neuro suggested an antidpressant also.

If you aren't seeing a neurologist who specializes in MS, that would also be my suggestion. I am seeing one of the top docs in this area. His wife has MS so he has quite the vested interest and personal experience with the disease!

This is a huge step in our lives and I can certainly understand the anxiety and fear - been there, done that! Keep us posted about your choice and when you are ready to begin we will be praying for you, cheering for you and sending you hugs galore! Jo

[risnerrose]

As if to drive the point home . . . I posted the above comment, returned to the forum, opened the thread with a DMD poll, and immediately began questioning if I made a mistake in selecting Betaseron :)  Oh well . . . gonna block out my doubts and move forward!  

I'll not sign this time . . . since I signed out twice on the above thread :)

[risnerrose]

Within the past month, there have been several discussion threads on selecting DMDs.  I know that Opie and I are both about to begin meds . . . and I'm sure there are others.  I'll try to bump a few of those threads back to the front page for you, since they have links which might help you decide.  I have similar concerns about the symptoms and the use of tylenol etc.  Copaxone does not list depression, liver issues, or flu-like symptoms; however, my neuro recommended Rebif or Betaseron.  I chose the later.  My dosages will be titrated in the beginning, and the nurse said this worked well to minimize those flu-like symptoms.

I'm "blocking" my fears right now . . . but I do have them . . . along with all of the "What if's?"  (What if I've been misdiagnosed?  What if I never progress - even without meds?  What if I become depressed? What if ????)  Of course, those are followed by "What if I wake up one morning unable to see or walk or both????"  What if my children have to care for me?  These possibilities scare me the most!!!

I just want you to know . . . you're not alone.  I'm scared, full of doubts and questions, and pray I'm making the right decisions.

I'm a few weeks ahead of you in this process . . . so if I can help more just ask or PM me.

Sherry

Sherry

[JennyO63]

YAY!! Fight, fight, fight this horrible disease!!! And if you need encouragement, we are all here for you. "Let it come toward you", my friend's mom used to tell us when we were young and anxoius about something. This same woman was a serious health food person, a dance instructor, and would compete in Dance competitions ballroom style. Despite her lifestyle of good nutrition, exercise, meditation, and well being, she contracted Pancreatic Cancer of which she survived an amazing 18 months with. Imagine the grief of her daughter, my best friend~ how can cancer happen to someone so vital and healthy?

So in the spirit of Mrs. Janice Levit-Ireland, "Let it come toward you". Face your fears head on, we are here to cheer you on!!!!!!!

                                      May God bless you

                                             JennyO63

[Auspiciousme]

Thanks Shell.  I am not sure if you should be proud of me yet!  You have no idea how much I am afraid of these drugs.  I am pretty sensetive to even Asprin!  How the heck am I gonna tolerate flu symptoms and all kinds of other symptoms?  I am not any more special than anyone else here and I know most of you here take the meds and don't complain as much as I have already!  I am just scared.  Which med are you on?  Side effects?  Which one should I start with?.....I already have bad depression and panic attacks, so I need something that doesn't make me worse?
Thank you so much for your note.  I haven't reached peace yet...but I am working on it.

[sllowe]

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

I, too, was in denial.

Proud of you!
-Shell