MS advice
MS advice
Hi, diagnosed with MS last year, new and progressing lesions (brain and spinal cord) Finding it hard to be hopeful about the future. I am single and don't have kids but have always wanted them. I feel like no one I know understands the grief I am going through, they just tell me to be positive which makes me feel all the more isolated because they are in good places in life and don't get it. Can anyone help with letting me know what they are doing in their situations to feel sane or hopeful and if anyone can suggest regimens that are working for them (no lesions, exacerbations) I can't afford the drugs, my insurance pays very little yet the drug companies feel i make to much..but that was last year..this year I have been so exhausted I have considered going on disability. Thanks!
You can check this site for many threads on supplements and vitamins people are taking that probably help with MS. But like anything with MS, it's tough to know if they are responsible for the lack of relapses, lesions, etc. since the natural course of MS can wax and wane. But one supplement that pops up most, and has shown some benefit in studies, is vitamin D.
The MS drugs are expensive, and even with insurance, many people have a tough time affording the co-pays. But if you're interested in trying of the drugs and can't afford them, one option might be a clinical trial. I guess it depends on how you feel about being a lab-rat, and what is offered near where yoy live. I haven't checked in a while, so I'm not sure what studies are ongoing. I think one is the study for terifluonomide:
http://tower3.msstudies.com/index.php
The MS drugs are expensive, and even with insurance, many people have a tough time affording the co-pays. But if you're interested in trying of the drugs and can't afford them, one option might be a clinical trial. I guess it depends on how you feel about being a lab-rat, and what is offered near where yoy live. I haven't checked in a while, so I'm not sure what studies are ongoing. I think one is the study for terifluonomide:
http://tower3.msstudies.com/index.php
I will second what LR1234 has suggested. Taking vitamin D is a no-brainer. The MS Recovery Diet book is great. Both diet and LDN can be very beneficial. Go to Skip's Pharmacy website for info on LDN and how to get it.
I assume you are aware of the whole CCSVI issue, which is turning the whole MS treatment world upside down. If you're not savvy on CCSVI, spend a few hours to read up on it on this website - it can change your whole outlook. My wife has followed all of these routes, and feels quite hopeful, and has seen some improvements.
I assume you are aware of the whole CCSVI issue, which is turning the whole MS treatment world upside down. If you're not savvy on CCSVI, spend a few hours to read up on it on this website - it can change your whole outlook. My wife has followed all of these routes, and feels quite hopeful, and has seen some improvements.
Hello
I know what you are talking about. Got diagnosed at 25-26, was single and still in uni. I moved out of the sharing falt i used to live in at the time, and moved back with my parents for a little while. Didn't feel I had much in common with other people my age. And it was also this having kids or not having kids worry.
I had, and still have relapsing-remitting, and it took years for it to get seriously bad, only last year. I had then benn ill for 7 years, but it was like I got diagnosed again, it really hit home what ms really is.
The first couple of years was quite bad as well, as I had quite a few attacks, but with almost full recovery. Pretty standard ms-development, really.
When you say you are exhausted all the time, it may of course be the ms, and fatigue, but you might as well be depressed. Maybe some time off work to think about life and stuff, think about what you want in your life and gofor it. Accept the disease, that you got it, and that it propably will limit you options in life, so you can sort out your priorities.
I'm also a beliver in keeping stresslevels down. If you go for setteling down and having a family, don't have a job as well.Don't exhaust yourself, don't push yourself, as I don't think it does your health much good. But thats just my thoughts and my experience.
I haven't got a very good experience with the drugs, i've tried avonex,copaxone and tysabri, so I am not any, even if I don't have to pay a penny towards them myself. They are pretty heavy drugs, and the side effects are not tolerated that well by everybody.
I will go for ccsvi testing and treatment in one week, and I have high hopes for that.
I know what you are talking about. Got diagnosed at 25-26, was single and still in uni. I moved out of the sharing falt i used to live in at the time, and moved back with my parents for a little while. Didn't feel I had much in common with other people my age. And it was also this having kids or not having kids worry.
I had, and still have relapsing-remitting, and it took years for it to get seriously bad, only last year. I had then benn ill for 7 years, but it was like I got diagnosed again, it really hit home what ms really is.
The first couple of years was quite bad as well, as I had quite a few attacks, but with almost full recovery. Pretty standard ms-development, really.
When you say you are exhausted all the time, it may of course be the ms, and fatigue, but you might as well be depressed. Maybe some time off work to think about life and stuff, think about what you want in your life and gofor it. Accept the disease, that you got it, and that it propably will limit you options in life, so you can sort out your priorities.
I'm also a beliver in keeping stresslevels down. If you go for setteling down and having a family, don't have a job as well.Don't exhaust yourself, don't push yourself, as I don't think it does your health much good. But thats just my thoughts and my experience.
I haven't got a very good experience with the drugs, i've tried avonex,copaxone and tysabri, so I am not any, even if I don't have to pay a penny towards them myself. They are pretty heavy drugs, and the side effects are not tolerated that well by everybody.
I will go for ccsvi testing and treatment in one week, and I have high hopes for that.
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
thebean! Your story and my story are the same.
After the worst attack yet, my neurologist took me off work for 2 months [temporary disability] to see if we can get my symptoms under control. That was yesterday. Tuesday I was at work, Wednesday I felt like I was going to die... and now disability, temporary as it may be. I feel horrible about 90% of the time... the other 10% I am trying to remind myself that I am tough and that I can still be who I was before this disease. But I'm starting to understand that maybe I can't. Even w/ the treatments, which seem to just make me sick, I'm not sure if I will get back to my old life. And to top it all off I have no money, bill collectors hounding me morning noon and night and now this... My insurance sucks, yet I make too much money to qualify for other insurance or even secondary insurance. Most of the doctor's appts and treatments are coming out of my pocket -- or they should be... I have a stack of medical bills I can't pay either. I am at a loss on what to do!
After the worst attack yet, my neurologist took me off work for 2 months [temporary disability] to see if we can get my symptoms under control. That was yesterday. Tuesday I was at work, Wednesday I felt like I was going to die... and now disability, temporary as it may be. I feel horrible about 90% of the time... the other 10% I am trying to remind myself that I am tough and that I can still be who I was before this disease. But I'm starting to understand that maybe I can't. Even w/ the treatments, which seem to just make me sick, I'm not sure if I will get back to my old life. And to top it all off I have no money, bill collectors hounding me morning noon and night and now this... My insurance sucks, yet I make too much money to qualify for other insurance or even secondary insurance. Most of the doctor's appts and treatments are coming out of my pocket -- or they should be... I have a stack of medical bills I can't pay either. I am at a loss on what to do!
hey there, don't worry there's room to be positive! i remember even being HAPPY that this happened to me, eventually, because it was a real kick in the pants about understanding medicine in this country and i finally realized that my health was my responsibility and not my doctor's. sounds so stupid in hindsight! my dx was in 2006 and i have learned so much about myself it's unreal. i never took any conventional drugs but read and read and read about nutritional status in ms patients compared to healthy controls. i have tons of info about various nutrients and what levels ought to be - which is a VERY SMALL WINDOW within the normal range. i think my second biggest and very important lesson was to understand the 'normal range' is a farcical indicator of health in conventional medicine, and is full of sick people.
furthermore, the last couple of years have seen the upswing of a new treatment for ms patients that i imagine you've heard about - there's hope there too.
anyway nutrition is my thing and it's been the thing of many before me. it's a great way to take control of your own path, whether you combine it with conventional treatments or not.
i agree that vitamin D is important, but there are other key nutrients like B12 and zinc in particular which should NOT be ignored in MS. there are many more but three's enough to start with.
my signature includes some links you may find interesting.
chin up, you can do this!
jimmylegs
furthermore, the last couple of years have seen the upswing of a new treatment for ms patients that i imagine you've heard about - there's hope there too.
anyway nutrition is my thing and it's been the thing of many before me. it's a great way to take control of your own path, whether you combine it with conventional treatments or not.
i agree that vitamin D is important, but there are other key nutrients like B12 and zinc in particular which should NOT be ignored in MS. there are many more but three's enough to start with.
my signature includes some links you may find interesting.
chin up, you can do this!
jimmylegs
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