Well, it would appear that you have gotten some education, but are still acting from a standpoint of fear. There have been less than half a dozen deaths from Tysabri throughout the world, yet the report of "one" instilled fear and anxiety. Tysabri is not one of the meds you would be choosing now, as it is reserved for those whose MS has taken an aggressive course. We have people here whose disease seems to have been turned around by this drug.
I believe to really balance this out you should talk to 5 people in nursing homes at a young age from MS and ask them if they had had a chance to slow their disease would they have taken it. You seem to be focusing on side effects of meds and not on the potential devastation of this disease. That is certainly your right, but I think you owe it to yourself to expose yourself to the bad side of the disease also. People at a seminar - even in a wheelchair - are well enough to make it to the seminar. You have not yet seen the bad side of MS.
The info that we only have 2 years of experience is false. We have formal studies now of 4+ years and 16 years of experience with a couple of the meds.
You describe the interferons a "poison." Nothing could be farther from the truth as interferons are a substance that is naturally produced by the body's immune system to help it do its job! Choose the course you want to with your life and with your body, but please don't mischaracterize the nature of the meds to make you feel more comfortable with your decision. I write this for the others that read your statement and could be misled.
I stand down now, as I realize your post was an invitation to diet and exercise along with you.
I wish you luck with your decision and hope you find allies in your quest for health. And I pray that your MS remains benign. Certainly a healthy diet and exercise could also augment a person on an MS drug.
Quix, MD
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.
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
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!!
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..
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
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
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...
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
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
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 ....
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
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
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.
You and I and risnerrose can start all of this together and compare notes.
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.
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
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)
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.
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
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 :)
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
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
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.