Aa
How did you decide to get treatment?
Hi. If you read my 1st posting here, you would know that I have decided against any kind of treatment for now. I have been told by many that I am making a mistake and I should have started a.s.a.p. but I am not convinced and my symptoms have been minimal since I was diagnosed (2 years ago). I was just wondering if anyone was willing to share how they decided to get therapy? Was it just a doctor's suggestion? Fear? Really bad symptoms? What was it exactly that made you decide to take medication? And if you have time, please let me know if you see any effects? Are you feeling better since you started the therapy? Side effects? Has anyone looked into anything else besides medication?
Thank you.
Thank you.
I'm a sort of strange case in that back in the 70's MS was mentioned as a possibility for my lack of peripheral vision. In 1983 I had an episode of disturbed speech and MS was mentioned again. There was no treatment then, or it was awfully new because nothing was ever suggested. Since my symptoms were so mild and nothing ever happened after the speech thing, I neatly filed MS in the "bogus" file and never told another doctor that someone had diagnosed me with it - can you say denial? Fast forward over 20 years and an opthamologist who was getting conflicting results in tests. Ordered an MRI - showed lesions and a dx of MS was concluded. The next week I saw a neurologist who, even at my advanced age (over 50), with no exacerbations in between, strongly urged me to take a DMD. It would seem that since I'd gone so long without any problems that my chances of not needing anything would be very high. Not necessarily so! The one thing we know about MS is that it is very unpredictable! I've been on Avonex for 6 years now! It is not a no win situation, but a win win in my opinion. I feel like I am being proactive in this fight and doing all I can, including a healthy diet and exercise, to keep it at bay. Aside from a slight headache once in awhile, I don't know I am even taking anything. Taking a DMD is part of a sensible treatment plan that includes healthy eating, exercise and having a good attitude. I agree, the decision is yours alone, and you will be supported in your decision no matter what!
I would like to give you a sort of answer on your questions about:
" If they haven't found the reason for MS, how could they find medication to help it? What are they helping? "
Actually they (the researchers) know a great deal about what is happening in MS. In many cases they can tell you molecule for molecule what is happening in MS and what many of the specific changes that are seen in the immune system. So they have a very good idea about where to target therapies.
What they don't know is
1) exactly what triggers these changes,
2) exactly how the medications work
3) what is the trigger that makes a person's MS deteriorate
4) exactly how to predict who will be the most disabled and when
and other things. But, they do know enough to design treatments that target some of the things that go wrong and that cause damage. They are NOT working in the dark. And the treatments are no being tested in the dark.
About the Ann Boroch site. This is mostly a diet designed for health. There are NO good studies that show that diet can truly reorganize a diseased immune system. The Swank diet doesn't show this and the MS diet doesn't show this. Those that claim there is are either not being truthful about the "studies" or they don't understand when something is evidence and when something is "one person's story" or a testimonial.
That said, if someone feels better on a specific diet then I am all for it! Feeling better is feeling better!
Testimonial evidence - what one person says about their experience is just a story. It may well be true for that person. What testimonial evidence (especially on the internet) doesn't tell us is 1) Was the person accurately diagnosed? 2) What else was happening in the person's life or disease? 3) Was the person going to improve anyway? 4) From the point in time that the person tell their story, did they worsen again?, 5) Is this even a real person?, 6) Is this person being paid? and those are just the unanswered question off the top of my head.
I am skeptical of heavy use of testimonial evidence. When I was in practice I saw disasters from heavily touted "cures" that depended on testimonial evidence. I saw my patients try things like Laetril (made from apricot pits and containing cyanide) for thier cancers, or get sheep red blood cells infusions for their allergies, or coffee-ground enemas for "whatever!" That last gave my patient amoebic dysentery, but a famous celebrity was getting the treatments so it seemed legitimate.
Again, I have no problems with a healthy diet and will admit that it is possible that it may give some improvement to MS. That point just has no real evidence, that I have seen.
But, again, though I hate to see people waste opportunities, each of us ultimately must live our own life.
quix
" If they haven't found the reason for MS, how could they find medication to help it? What are they helping? "
Actually they (the researchers) know a great deal about what is happening in MS. In many cases they can tell you molecule for molecule what is happening in MS and what many of the specific changes that are seen in the immune system. So they have a very good idea about where to target therapies.
What they don't know is
1) exactly what triggers these changes,
2) exactly how the medications work
3) what is the trigger that makes a person's MS deteriorate
4) exactly how to predict who will be the most disabled and when
and other things. But, they do know enough to design treatments that target some of the things that go wrong and that cause damage. They are NOT working in the dark. And the treatments are no being tested in the dark.
About the Ann Boroch site. This is mostly a diet designed for health. There are NO good studies that show that diet can truly reorganize a diseased immune system. The Swank diet doesn't show this and the MS diet doesn't show this. Those that claim there is are either not being truthful about the "studies" or they don't understand when something is evidence and when something is "one person's story" or a testimonial.
That said, if someone feels better on a specific diet then I am all for it! Feeling better is feeling better!
Testimonial evidence - what one person says about their experience is just a story. It may well be true for that person. What testimonial evidence (especially on the internet) doesn't tell us is 1) Was the person accurately diagnosed? 2) What else was happening in the person's life or disease? 3) Was the person going to improve anyway? 4) From the point in time that the person tell their story, did they worsen again?, 5) Is this even a real person?, 6) Is this person being paid? and those are just the unanswered question off the top of my head.
I am skeptical of heavy use of testimonial evidence. When I was in practice I saw disasters from heavily touted "cures" that depended on testimonial evidence. I saw my patients try things like Laetril (made from apricot pits and containing cyanide) for thier cancers, or get sheep red blood cells infusions for their allergies, or coffee-ground enemas for "whatever!" That last gave my patient amoebic dysentery, but a famous celebrity was getting the treatments so it seemed legitimate.
Again, I have no problems with a healthy diet and will admit that it is possible that it may give some improvement to MS. That point just has no real evidence, that I have seen.
But, again, though I hate to see people waste opportunities, each of us ultimately must live our own life.
quix
Came across this and just thought I'd throw it out there. They're talking about various studies that are trying to do head-to-head comparisons of the current DMDs:
"Patients on either treatment, however, had much lower on-study relapse rates than were expected on the basis of the results from previous studies of IFNβ-1a [interferon beta] or GA [Copaxone] compared with placebo: the reductions in annualised relapse rate from baseline were nearly 70% for both therapies, whereas the reduction reported in the PRISMS (Prevention of Relapses and Disability by Interferon beta-1a Subcutaneously in Multiple Sclerosis) prospective crossover study for IFNβ-1a was only 50%. ...
As a whole, the populations in these studies had less-advanced disease compared with their historical counterparts. The results of these studies point to the same conclusion: that starting these partially effective therapies earlier in a population that has less-advanced disease can yield greater response rates than could have been predicted from the influential studies that were done more than a decade ago."
("Multiple sclerosis: following clues from cause to cure" by Heather J MacLean and Mark S Freedman, p 6-7. You can get this article for free at http://www.thelancet.com/journals/laneur/article/PIIS1474-4422(08)70272-2/fulltext if you register)
Anyway, it really does speak to the importance of starting the DMDs sooner rather than later.
sho
"Patients on either treatment, however, had much lower on-study relapse rates than were expected on the basis of the results from previous studies of IFNβ-1a [interferon beta] or GA [Copaxone] compared with placebo: the reductions in annualised relapse rate from baseline were nearly 70% for both therapies, whereas the reduction reported in the PRISMS (Prevention of Relapses and Disability by Interferon beta-1a Subcutaneously in Multiple Sclerosis) prospective crossover study for IFNβ-1a was only 50%. ...
As a whole, the populations in these studies had less-advanced disease compared with their historical counterparts. The results of these studies point to the same conclusion: that starting these partially effective therapies earlier in a population that has less-advanced disease can yield greater response rates than could have been predicted from the influential studies that were done more than a decade ago."
("Multiple sclerosis: following clues from cause to cure" by Heather J MacLean and Mark S Freedman, p 6-7. You can get this article for free at http://www.thelancet.com/journals/laneur/article/PIIS1474-4422(08)70272-2/fulltext if you register)
Anyway, it really does speak to the importance of starting the DMDs sooner rather than later.
sho
Hello everyone. Thank you for all your help. This really helps me. I have an appointment in Jan to do another MRI. & I will talk to my doctor again about meds. I will also start my diet again (the best way I can, because it's reeeeeeeallly hard..)..and see what happens. I am moving towards using meds..but I really hate..hate harsh meds and what they do to your body. They may fix one thing but the sure ruin another. There is no winning? Seems like it's a lose lose situation!
I will let you know how it goes...
Thank you again for your notes.
I will let you know how it goes...
Thank you again for your notes.
Everyone has already given you good info and advice, but I'm going to stick my two cents in anyway.
I totally understand not wanting to take meds. I was like that when I was dx'd. I have always had an irrational dislike of taking meds (When I got my first cavity at around ten, I turned down the novacaine. I never did that again, but that gives you an idea). I know this is irrational and there are lots of dangerous natural substances and medicines where the benefit far outweighs the potential risks, but there you have it.
What I got from my neuro was that the frontline MS drugs have safe track records over a substantial period of time and the drawbacks are more cost and inconvenience.
When I was dx'd the neuro seemed to think I had mild MS and recommended not taking a DMD. This was what I wanted to hear, but in retrospect I think he misjudged the situation. He seemed to look at it from the point of view that I had my first symptom almost ten years before dx and I was still fairly normal. I felt like the frog slowly boiling to death with a slow, but inexorable progression. Anyway, since March, I have had a more pronounced decline--not horrible in the grand scheme of things, but I struggle with many more things and feel a lot like Sisyphus in my daily life these days. In my case, it was probably both too late by the time I was properly dx'd and I wasn't really having relapses anyway, but if you are having relapses and remissions, I would think seriously about the potential for regret if you don't try the DMDs.
I did check out the Ann Boroch website, but I don't think there's enough info there to judge one way or the other. I am experimenting with my diet and I don't think there's any harm in trying. A lot of the diets recommended for MS, like the Swank diet, are healthy and not dangerous. It doesn't seem to me that it has to be a mutually exclusive choice--you can change your diet and take the meds.
Also, it is really hard to judge from anecdotes. I'm in a clinical trial and before I started, my neuro told me this story about a women he had seen on TV who had MS and was in a trial for Tysabri. Apparently, she was in a wheelchair and pretty badly off and the trial really helped her--she was raving about how she could walk again and do all these things. The catch was, she was on the placebo.
Especially with MS, where everything is so variable, it's just too hard to say what causes what in a given individual and there haven't been any widely-accepted, large-scale trials of any dietary approach (and they would, unfortunately, be really hard to fund and run anyway).
sho
I totally understand not wanting to take meds. I was like that when I was dx'd. I have always had an irrational dislike of taking meds (When I got my first cavity at around ten, I turned down the novacaine. I never did that again, but that gives you an idea). I know this is irrational and there are lots of dangerous natural substances and medicines where the benefit far outweighs the potential risks, but there you have it.
What I got from my neuro was that the frontline MS drugs have safe track records over a substantial period of time and the drawbacks are more cost and inconvenience.
When I was dx'd the neuro seemed to think I had mild MS and recommended not taking a DMD. This was what I wanted to hear, but in retrospect I think he misjudged the situation. He seemed to look at it from the point of view that I had my first symptom almost ten years before dx and I was still fairly normal. I felt like the frog slowly boiling to death with a slow, but inexorable progression. Anyway, since March, I have had a more pronounced decline--not horrible in the grand scheme of things, but I struggle with many more things and feel a lot like Sisyphus in my daily life these days. In my case, it was probably both too late by the time I was properly dx'd and I wasn't really having relapses anyway, but if you are having relapses and remissions, I would think seriously about the potential for regret if you don't try the DMDs.
I did check out the Ann Boroch website, but I don't think there's enough info there to judge one way or the other. I am experimenting with my diet and I don't think there's any harm in trying. A lot of the diets recommended for MS, like the Swank diet, are healthy and not dangerous. It doesn't seem to me that it has to be a mutually exclusive choice--you can change your diet and take the meds.
Also, it is really hard to judge from anecdotes. I'm in a clinical trial and before I started, my neuro told me this story about a women he had seen on TV who had MS and was in a trial for Tysabri. Apparently, she was in a wheelchair and pretty badly off and the trial really helped her--she was raving about how she could walk again and do all these things. The catch was, she was on the placebo.
Especially with MS, where everything is so variable, it's just too hard to say what causes what in a given individual and there haven't been any widely-accepted, large-scale trials of any dietary approach (and they would, unfortunately, be really hard to fund and run anyway).
sho
I 2nd, or 3rd or whatever number we are at for a HP on this.
Auspisone,
Your thoughts are understandable. For me, in the end, I went with the facts and did the math. My original thinking was off. I thought originally it was a 50/50 shot that I'd progress, or not w/the meds. So, I was really struggling with my decision to med or not to med. But on top of that (pretty big but coming), the real problem showed itself during this "indecision."
I was not only struggling w/the meds to treat -- I was struggling with the fact of the dx - proof even. I simply did not totally believe it at the time. I'm not so sure how you felt when you received the dx, but if it's combined w/anything like it was for me, it will make the decision so much harder.
I'm on meds now. I still struggle sometimes and despise shots often. Not due to pain, side affects etc., just because once and awhile that indecision creeps back up on me like an arch enemy. But, I do it anyway, because I tell myself that the facts speak for themselves, I have proof in the CNS damage, and I'm very much a fact person.
It's such a very personal decision though and I respect yours. If you struggle with it though once and awhile, I hope my story helps you. It's a hard one especially when the information in front of you says "early treatment is best." So, in my mind the questions would roll around, and I would ask myself, "if I linger and there is more damage, will it be too late for me to treat w/the meds?" If I treat, will it happen anyway?
Hope I didn't confuse this further.
Here for you no matter what,
Shelly
Auspisone,
Your thoughts are understandable. For me, in the end, I went with the facts and did the math. My original thinking was off. I thought originally it was a 50/50 shot that I'd progress, or not w/the meds. So, I was really struggling with my decision to med or not to med. But on top of that (pretty big but coming), the real problem showed itself during this "indecision."
I was not only struggling w/the meds to treat -- I was struggling with the fact of the dx - proof even. I simply did not totally believe it at the time. I'm not so sure how you felt when you received the dx, but if it's combined w/anything like it was for me, it will make the decision so much harder.
I'm on meds now. I still struggle sometimes and despise shots often. Not due to pain, side affects etc., just because once and awhile that indecision creeps back up on me like an arch enemy. But, I do it anyway, because I tell myself that the facts speak for themselves, I have proof in the CNS damage, and I'm very much a fact person.
It's such a very personal decision though and I respect yours. If you struggle with it though once and awhile, I hope my story helps you. It's a hard one especially when the information in front of you says "early treatment is best." So, in my mind the questions would roll around, and I would ask myself, "if I linger and there is more damage, will it be too late for me to treat w/the meds?" If I treat, will it happen anyway?
Hope I didn't confuse this further.
Here for you no matter what,
Shelly
Here is my take on natural cures. Now I'll be honest and say that I haven't read anything about natural cures for MS. However......
a few years ago my dd was dx with a LD and ADD. The school system would only provide services if she were medicated. (That is a whole other story.) We tried one medication and she had such difficulty taking it that it was ineffective. So we tried a patch form that gave her serious side effects and so we discontinued it.
I then went online and found out different things in our diet can have an effect on behavior and learning. I modified our diet (I'm not going to eat things that she can not) over the summer and by the time school started I really noticed a difference in her behavior and attention span.
Now I noticed a difference, BUT it did not cure her LD or the ADD. The artificial dyes, added sugars and hydrogenated oils made the symptoms worse, but even when they were removed from her diet, she still has special needs. She even admits now that she feels better when she eats right and is very careful when trying new foods. She reads food labels, tells people why she doesn't eat certain things, and she is becoming quite the little cook because we do most things from scratch. She feels better because she is eating better, but again, she still has a LD and an attention problem and most likely always will.
Just my take on 'natural' cures. HTH
a few years ago my dd was dx with a LD and ADD. The school system would only provide services if she were medicated. (That is a whole other story.) We tried one medication and she had such difficulty taking it that it was ineffective. So we tried a patch form that gave her serious side effects and so we discontinued it.
I then went online and found out different things in our diet can have an effect on behavior and learning. I modified our diet (I'm not going to eat things that she can not) over the summer and by the time school started I really noticed a difference in her behavior and attention span.
Now I noticed a difference, BUT it did not cure her LD or the ADD. The artificial dyes, added sugars and hydrogenated oils made the symptoms worse, but even when they were removed from her diet, she still has special needs. She even admits now that she feels better when she eats right and is very careful when trying new foods. She reads food labels, tells people why she doesn't eat certain things, and she is becoming quite the little cook because we do most things from scratch. She feels better because she is eating better, but again, she still has a LD and an attention problem and most likely always will.
Just my take on 'natural' cures. HTH
The other point that is possible about people with MS who are cured by alternative therapies - maybe they had a mimic and not MS. That happens too.
The DMD's have not been around that long, so people who had MS dx'd 15-20 years ago probably were not offered dmd's.
I have heard all sorts of suggestions from people about how I should treat my MS, including two women who say they also have MS.
One swears when she was told, she told her doctor she would not have MS and willed it away through meditation, massage and Austrian Pine Bark capsules.
The other is following some european diet and choses to not be retested, firmly believing her MS is better. However her raynauds, arthritis, allergies, fibro and a bunch of other things are all worse. If the diet is so great for balancing the system and fighting immuno disease, I would think all of those would show improvement.
Both of these women who swear they are better conveniently have not been retested since their initial diagnosis. It makes me so sad when I think of what they may be doing to their body if they really do have MS.
I hope this rambling makes sense.
Lulu
The DMD's have not been around that long, so people who had MS dx'd 15-20 years ago probably were not offered dmd's.
I have heard all sorts of suggestions from people about how I should treat my MS, including two women who say they also have MS.
One swears when she was told, she told her doctor she would not have MS and willed it away through meditation, massage and Austrian Pine Bark capsules.
The other is following some european diet and choses to not be retested, firmly believing her MS is better. However her raynauds, arthritis, allergies, fibro and a bunch of other things are all worse. If the diet is so great for balancing the system and fighting immuno disease, I would think all of those would show improvement.
Both of these women who swear they are better conveniently have not been retested since their initial diagnosis. It makes me so sad when I think of what they may be doing to their body if they really do have MS.
I hope this rambling makes sense.
Lulu
Auspie - I understand that it all seem like a wilderness. It turns out that all of the meds work about equally well. So, the only decision is based on frequency, type of shot and possibility of side effects. And with the lesion load increasing in your brain like you say, I would be terribly scared.
As far harsh chemicals, well, .....none of them is more harsh than the damage being wreaked on your brain, spine and life by this disease.
If it helps...three of the meds Avonex, Rebif and Bestaseron are all natural chemicals that are produced by your own immune system. Your body makes Interferons on its own. The MS meds are just much higher doses so that they change the balance of "part" of the immune system. It is somewhat like steroids (which are also produced by your body), just a lot safer.
The interferons-beta are NOT immunosuppressants like chemotherapy. They do not leave you open to serious infections nor do they raise the possibility of later cancers like many chemo agents. There is a great misunderstanding about this and a lot of people out there saying false things. After 16 years of study there have been no new things rise up to worry us.
Now, Copaxone is a synthetic med with fewer side effects and it needs to be used every day.
As to people who claim to have found a natural way to treat/cure MS? If this were true it would be known. Too many of the researchers in the field are there because they or a loved one have MS. Nothing is being overlooked. I am very skeptical about the couple dozen unstudied ways people are promoting for treatment of MS.
Quix
As far harsh chemicals, well, .....none of them is more harsh than the damage being wreaked on your brain, spine and life by this disease.
If it helps...three of the meds Avonex, Rebif and Bestaseron are all natural chemicals that are produced by your own immune system. Your body makes Interferons on its own. The MS meds are just much higher doses so that they change the balance of "part" of the immune system. It is somewhat like steroids (which are also produced by your body), just a lot safer.
The interferons-beta are NOT immunosuppressants like chemotherapy. They do not leave you open to serious infections nor do they raise the possibility of later cancers like many chemo agents. There is a great misunderstanding about this and a lot of people out there saying false things. After 16 years of study there have been no new things rise up to worry us.
Now, Copaxone is a synthetic med with fewer side effects and it needs to be used every day.
As to people who claim to have found a natural way to treat/cure MS? If this were true it would be known. Too many of the researchers in the field are there because they or a loved one have MS. Nothing is being overlooked. I am very skeptical about the couple dozen unstudied ways people are promoting for treatment of MS.
Quix
I do worry about my decision and that's why I wanted to know some other people's reasons to take medication. I had only 9 lession when I was first diagnosed back in Jan 2007. Jan 2008, there were 18. I have to do another MRI in Jan and I afraid to know how many more I have. I feel like I have put my head in the sand when I think about what I am doing about my MS which is "nothing". However I hate taking medications and putting harsh chemicals in my body especially when I am not even sure if they help. But what upsets me is that my doctors (and I have seen several) didn't really tell me what I should do. They told me to decide which one I want to go on? What do I know? How can I decide which is better? I don't want my decision to be based on how many needles I have to put in myself within a week. I also mentioned before that I have met this person that has cured herself from terrible MS just with diet and excercise. I saw her with my own eyes. I saw another lady that couldn't see and was on wheelchair for 2 years and she now can see and is out of wheelchair and neither one is taking meds. Are they just lucky?
I appreciate you all trying to tell me that I should start meds a.s.a.p...& because of these posts, I am going to talk to my doctor again and research some more about the meds available but at the moment, I am just not convinced that they really help. If they haven't found the reason for MS, how could they find medication to help it? What are they helping?
Did anyone see the website that I mentioned in my 1st post? Can you please tell me what you guys think of it? I am sorry, I don't mean to be negative. I am just lost and I hope someone's post could help me make the right decision.
The website again was www.annboroch.com. Plz tell me if I am crazy?! I want to know!
Thank you all for your time.
I appreciate you all trying to tell me that I should start meds a.s.a.p...& because of these posts, I am going to talk to my doctor again and research some more about the meds available but at the moment, I am just not convinced that they really help. If they haven't found the reason for MS, how could they find medication to help it? What are they helping?
Did anyone see the website that I mentioned in my 1st post? Can you please tell me what you guys think of it? I am sorry, I don't mean to be negative. I am just lost and I hope someone's post could help me make the right decision.
The website again was www.annboroch.com. Plz tell me if I am crazy?! I want to know!
Thank you all for your time.
I am undiagnosed. I have "probable MS". I have also seen my DX listed as, demylenating disease and progressive memory loss. The first time I had see na doctor in years was 7/31/08. My symptoms brought to the doctor and they have worsened over the past 6 mos. As I look back I can see that I had a big flair in 1984 and a moderate one in 1999. So you can see I have had a relatively mild progression until this year.
If I had realized what my symptoms were or at least saw a doctor, I prpbably wouldn't be in the shape I am now. I may have had the opportunity to have taken a DMD and slowed the progression. That is hindsight.
Now I am hoping someone will give me a DX so I can get on DMDs and not deteriorate any farther or at least not as fast.
Wishing you a Happy and peace filled holiday
terry
If I had realized what my symptoms were or at least saw a doctor, I prpbably wouldn't be in the shape I am now. I may have had the opportunity to have taken a DMD and slowed the progression. That is hindsight.
Now I am hoping someone will give me a DX so I can get on DMDs and not deteriorate any farther or at least not as fast.
Wishing you a Happy and peace filled holiday
terry
I was just recently diagnosed, but my neurologist was quick to say that once the results of my LP and bloodwork come back that I needed to start a DMD right away.
7 years ago I had an MRI done for migraines. I had 5 lesions then and was sent on my way saying it was normal for people that suffer from migraines. I just had another MRI last month because over the summer I started going downhill (pain, tingling, tremor, walking & balance issues, optic neuritis, etc) and really have not gotten better. Now I have almost 20 lesions!
I was shocked at first to be told I had MS, but now I'm ticked off that nothing was done about the lesions when they were first noticed. I could have been on one of those medications and not be in the position I am in now.
Anyway, even though I have a phobia of needles, I have decided to take one of the DMD's. I am getting around now without assistance and I want to keep it that way for as long as I can. I'm not sure which one I want to try, but I do know that I hope to be on one within the next month. For me, it can not be soon enough.
7 years ago I had an MRI done for migraines. I had 5 lesions then and was sent on my way saying it was normal for people that suffer from migraines. I just had another MRI last month because over the summer I started going downhill (pain, tingling, tremor, walking & balance issues, optic neuritis, etc) and really have not gotten better. Now I have almost 20 lesions!
I was shocked at first to be told I had MS, but now I'm ticked off that nothing was done about the lesions when they were first noticed. I could have been on one of those medications and not be in the position I am in now.
Anyway, even though I have a phobia of needles, I have decided to take one of the DMD's. I am getting around now without assistance and I want to keep it that way for as long as I can. I'm not sure which one I want to try, but I do know that I hope to be on one within the next month. For me, it can not be soon enough.
This was a good topic, since i recently brought up being older before being dx'd with MS.
I had no idea until the fatigue hit me and lots of pain. Not sure how much the pain had to do with it but those were the first two problems that started the testing. I did know that if I have it at this age then I had it earlier in my life and just had not known it. I was not sure whether or not the meds would help me or not. You can always hope that it coud still slow it down from this point. I do feel as if it is getting worse now, especially my eyes. The fatigue just got worse and never improving.
So its good to hear all of this. And I too appreciate knowledge anyone has to share on this topic.
thanks, meg
I had no idea until the fatigue hit me and lots of pain. Not sure how much the pain had to do with it but those were the first two problems that started the testing. I did know that if I have it at this age then I had it earlier in my life and just had not known it. I was not sure whether or not the meds would help me or not. You can always hope that it coud still slow it down from this point. I do feel as if it is getting worse now, especially my eyes. The fatigue just got worse and never improving.
So its good to hear all of this. And I too appreciate knowledge anyone has to share on this topic.
thanks, meg
Hi Auspicious,
The forum members above had done an excellent job of posting specific reasons why dmd's should be started as early as possible.
My reasons, beyond those, are I value being able to walk, to dress myself, to take care of my own hygiene needs, to stand at my oven and cook, to be able to drive to the mall and shop when I want, to socialize normally at eye level and not from a sitting position, .... need I go on?
Please please consider starting the drugs immediately - it is your best shot at normalicy!
Lulu
The forum members above had done an excellent job of posting specific reasons why dmd's should be started as early as possible.
My reasons, beyond those, are I value being able to walk, to dress myself, to take care of my own hygiene needs, to stand at my oven and cook, to be able to drive to the mall and shop when I want, to socialize normally at eye level and not from a sitting position, .... need I go on?
Please please consider starting the drugs immediately - it is your best shot at normalicy!
Lulu
Quix, you explained it so well. Well done, girlfriend, as always. As Ess said, this should be a part of the "Health Pages." Great article and great advice.
Even though my very first MRI showed 5 lesions in the brain and one in the spinal cord..until I had my first "attack," I noticed NO troublesome symptoms of these lesions in my brain. We all know or can surmise that these lesions were probably in my brain, before my first attack. This was at age 42.
Even back then, there were physicians that did not understand the importance of starting any DMD treatment early. So I had no treatment for the MS for the first 4 years after diagnosis. My MRI's remained stable, even though I was clearly having relapses and remissions. No lesions enhanced to indicate any active demyelination process. So Neuro #2, basing his decision totally on no signs of progression said, "This can't be MS. MS doesn't do this. You would have seen an increase in lesions by now." So he took away my diagnosis, despite continuing symptoms. As you imply Quix, these are years that are lost and lost forever.
Neuro #3 also did an MRI and found that my lesions was the same at 5 years out. One thing that did show change, was the LP. So again I had a diagnosis of Relapsing/Remitting MS. I was immediately put on Avonex. As this Neuro said, precious time had been lost, when I was not treated with any DMD from the very start.
Three years of Avonex, then I quit taking it on my own. Neuro #4 did another MRI after two years without DMD's and found 12 lesions now in my brain. I was immediately put on Copaxone. Now one year out, I have had no increase in lesion load, despite continuing symptoms and minimal brain volume loss. I believe due to taking a DMD.
I truly believe that it were not for the DMD's that I did take, that my lesion load would be much greater and possibly my disability greater. We know that brain tissue is lost with continual demyelination. This is brain tissue that cannot be replaced.
When I person's symptoms are mild, they are in a kind of "denial," that MS is really active and causing damage. This lady is here to tell you, that whether you "see" activity on brain MRI's, MS is always active. Many times doing damage that cannot be seen on MRI. Then suddenly, those lesions that could not be seen on MRI, are seen clearly. Probably due to MRI's equipment that now have increased strength, to see what could not be seen before.
So to take a DMD or not take a DMD based on your symptoms? Your symptoms can remain fairly mild for a long time or a short amount of time, then suddenly without benefit of DMD therapy, things suddenly turn worse. You have now lost those years when the DMD's could have helped the most. I'll take that 40% chance any day, that the DMD's are keeping the MS from destroying more brain tissue. They have been shown to be effective, so that's all I need to keep taking my shots regularly.
It's like diabetes...you don't "feel sick," or high blood pressure....so you don't take your medications...then suddenly, you lose your eyesight to damage from diabetes or suddenly suffering a stroke or heart attack, because you chose not to treat your blood pressure. "You felt well, remember?" When all this happens the damage has been done. Just like diabetes and high blood pressure, MS can seem silent and show no outward signs that it's active...but you chose not to use the MS medications. Suddenly one day...you have that event that changes everything and you suddenly begin to progress. Then you ask yourself, "Why didn't I take those DMD's when they were offered to me? Even though my symptoms were mild?"
It's the damage you DON'T see, that will be your downfall. It's not worth the risk, in my opinion. Too many of us here on the Forum went without treatment for too long. There are many here that will tell you that they wish they had those years back. If only they had taken the medications that were available or had a doctor that didn't count lesions and gave them a a diagnosis (especially when it was slapping them in the face all along), so they could get their diagnosis. And start DMD treatment. If only....
"Auspicious" you don't want to be one of those people a few years from now saying, "What if I had taken those DMD's when I was given the chance?" If only....
Sorry to have written a novel here. I am very passionate about this subject, since Iam now 13 years out and am one of the ones that did say, "If only....." How my life today, may have been so much different.
'Auspicious,' I do say all of this, with the utmost compassion in my heart. Each member on this Forum is part of a family. We all care for each other...so it's with this passion that I plead with you to reconsider the DMD's. For your future..... I never want you to say, "What if?"
All the Best,
Heather
Even though my very first MRI showed 5 lesions in the brain and one in the spinal cord..until I had my first "attack," I noticed NO troublesome symptoms of these lesions in my brain. We all know or can surmise that these lesions were probably in my brain, before my first attack. This was at age 42.
Even back then, there were physicians that did not understand the importance of starting any DMD treatment early. So I had no treatment for the MS for the first 4 years after diagnosis. My MRI's remained stable, even though I was clearly having relapses and remissions. No lesions enhanced to indicate any active demyelination process. So Neuro #2, basing his decision totally on no signs of progression said, "This can't be MS. MS doesn't do this. You would have seen an increase in lesions by now." So he took away my diagnosis, despite continuing symptoms. As you imply Quix, these are years that are lost and lost forever.
Neuro #3 also did an MRI and found that my lesions was the same at 5 years out. One thing that did show change, was the LP. So again I had a diagnosis of Relapsing/Remitting MS. I was immediately put on Avonex. As this Neuro said, precious time had been lost, when I was not treated with any DMD from the very start.
Three years of Avonex, then I quit taking it on my own. Neuro #4 did another MRI after two years without DMD's and found 12 lesions now in my brain. I was immediately put on Copaxone. Now one year out, I have had no increase in lesion load, despite continuing symptoms and minimal brain volume loss. I believe due to taking a DMD.
I truly believe that it were not for the DMD's that I did take, that my lesion load would be much greater and possibly my disability greater. We know that brain tissue is lost with continual demyelination. This is brain tissue that cannot be replaced.
When I person's symptoms are mild, they are in a kind of "denial," that MS is really active and causing damage. This lady is here to tell you, that whether you "see" activity on brain MRI's, MS is always active. Many times doing damage that cannot be seen on MRI. Then suddenly, those lesions that could not be seen on MRI, are seen clearly. Probably due to MRI's equipment that now have increased strength, to see what could not be seen before.
So to take a DMD or not take a DMD based on your symptoms? Your symptoms can remain fairly mild for a long time or a short amount of time, then suddenly without benefit of DMD therapy, things suddenly turn worse. You have now lost those years when the DMD's could have helped the most. I'll take that 40% chance any day, that the DMD's are keeping the MS from destroying more brain tissue. They have been shown to be effective, so that's all I need to keep taking my shots regularly.
It's like diabetes...you don't "feel sick," or high blood pressure....so you don't take your medications...then suddenly, you lose your eyesight to damage from diabetes or suddenly suffering a stroke or heart attack, because you chose not to treat your blood pressure. "You felt well, remember?" When all this happens the damage has been done. Just like diabetes and high blood pressure, MS can seem silent and show no outward signs that it's active...but you chose not to use the MS medications. Suddenly one day...you have that event that changes everything and you suddenly begin to progress. Then you ask yourself, "Why didn't I take those DMD's when they were offered to me? Even though my symptoms were mild?"
It's the damage you DON'T see, that will be your downfall. It's not worth the risk, in my opinion. Too many of us here on the Forum went without treatment for too long. There are many here that will tell you that they wish they had those years back. If only they had taken the medications that were available or had a doctor that didn't count lesions and gave them a a diagnosis (especially when it was slapping them in the face all along), so they could get their diagnosis. And start DMD treatment. If only....
"Auspicious" you don't want to be one of those people a few years from now saying, "What if I had taken those DMD's when I was given the chance?" If only....
Sorry to have written a novel here. I am very passionate about this subject, since Iam now 13 years out and am one of the ones that did say, "If only....." How my life today, may have been so much different.
'Auspicious,' I do say all of this, with the utmost compassion in my heart. Each member on this Forum is part of a family. We all care for each other...so it's with this passion that I plead with you to reconsider the DMD's. For your future..... I never want you to say, "What if?"
All the Best,
Heather
Ditto on all of the above points. I was not motivated by fear to start treatment. I was motivated as a result of educating myself through the reams of literature I read (New England Journal of Medicine; Journal of Multiple Sclerosis; Journal of Neurology; etc) which favour early treatment to potentially prevent irreversible neurologic damage. Forgoing DMD treatment and hoping for the best was not the right choice for me.
This whole thread, questions and answers, would make a great Health Pages addition. It's very concise, and Quix has summed up the situation perfectly.
ess
ess
The points that would convince me now to get treatment even if my symptoms are mild are these:
1) The best time to treat is early in the disease. Any treatment done early in the disease (the first several years) is more effective than the same med and length of treatment done later. Once symptoms turn bad it is too late to start the meds and expect them to have their full usefulness.
2) There have now been recent studies of people who have not been treated because of "benign MS." One was examining how well these people were walking at 15 and 20 years after diagnosis. For almost a third of the people the disease was no longer benign and they had difficulty with walking requiring some assistance.
The second study on "benign MS" was something that for many years was ignored and that is cognitive function. At 20 years 29% of the people had noticeable deterioration in their cognitive function. About half of those had significant reduction in their cognitive ability.
The emerging view is that there is such thing as benign MS at diagnosis, but it can only be diagnosed at the end of life in hindsight. We have no good predictors of who will drop out of the "benign" category. You can say that "so far things have looked benign."
So your odds without meds are about 2 in 3 that you will be "okay." And 1 in 3 that you will have trouble walking and/or thinking. Not that great.
Occasionally, a person with previously mild disease will suddenly enter a phase of fairly rapid and severe worsening with pain and disability. We have several of those here on the forum. I hope they see this and speak up.
The current MS meds do not promise and aren't expected to "make anyone better." What they have been shown to show in about 40% of the people who take them, is a slowing of the progess of the disease and a slowing in the deteroration/atrophy of the brain. The meds do not improve current symptoms.
Now, I know how bad MS can get. I was willing to try the treatments that have real evidence and a real chance of slowing this deteroration. I felt I owed it to myself and the people who are going to have to take care of me if it all doesn't work well enough. It's the best shot we have at this time.
My side effects are mild muscle aching for about 12 hours after my shot once a week. I sleep through them and only notice when I get up to pee.
I could have waited for the promised "better meds" to come along, but, as a physician I have seen too many promised meds either never arrive or arrive only to show unacceptable side effects and be removed from availablility.
Your decision is always your own. But 2 years of mild disease is not a strong predictor of your future course. The best predictor is 10 years, when your best window of opportunity for effective treatment is already past.
But, we also have others who have decided for various reason to not use a DMD. We all have to live our own lives.
Quix
1) The best time to treat is early in the disease. Any treatment done early in the disease (the first several years) is more effective than the same med and length of treatment done later. Once symptoms turn bad it is too late to start the meds and expect them to have their full usefulness.
2) There have now been recent studies of people who have not been treated because of "benign MS." One was examining how well these people were walking at 15 and 20 years after diagnosis. For almost a third of the people the disease was no longer benign and they had difficulty with walking requiring some assistance.
The second study on "benign MS" was something that for many years was ignored and that is cognitive function. At 20 years 29% of the people had noticeable deterioration in their cognitive function. About half of those had significant reduction in their cognitive ability.
The emerging view is that there is such thing as benign MS at diagnosis, but it can only be diagnosed at the end of life in hindsight. We have no good predictors of who will drop out of the "benign" category. You can say that "so far things have looked benign."
So your odds without meds are about 2 in 3 that you will be "okay." And 1 in 3 that you will have trouble walking and/or thinking. Not that great.
Occasionally, a person with previously mild disease will suddenly enter a phase of fairly rapid and severe worsening with pain and disability. We have several of those here on the forum. I hope they see this and speak up.
The current MS meds do not promise and aren't expected to "make anyone better." What they have been shown to show in about 40% of the people who take them, is a slowing of the progess of the disease and a slowing in the deteroration/atrophy of the brain. The meds do not improve current symptoms.
Now, I know how bad MS can get. I was willing to try the treatments that have real evidence and a real chance of slowing this deteroration. I felt I owed it to myself and the people who are going to have to take care of me if it all doesn't work well enough. It's the best shot we have at this time.
My side effects are mild muscle aching for about 12 hours after my shot once a week. I sleep through them and only notice when I get up to pee.
I could have waited for the promised "better meds" to come along, but, as a physician I have seen too many promised meds either never arrive or arrive only to show unacceptable side effects and be removed from availablility.
Your decision is always your own. But 2 years of mild disease is not a strong predictor of your future course. The best predictor is 10 years, when your best window of opportunity for effective treatment is already past.
But, we also have others who have decided for various reason to not use a DMD. We all have to live our own lives.
Quix
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