Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
This community is a place where members can discuss current events and weigh in on what's going on in the world.
They were not doing anything for me, I was having a lot of relapses & going downhill with them,
Havent substituted anything. Just tried to keep going & when I have to I go on the drip for 3 days but now my neuro doesnt want me to have any more because of other problems from too much cortisone.
Dont know if I have helped but it is an individual decison for sure. I did it with the agreement of my neurologist. That is important to me as I am still being monitored by him too.
I think one has to be their own health advocate. I was looking to improve the quality of life and taking an ABC drug would not fit that for me. I'm very pleased that I am making changes in my MS treatment which will allow me to get back to the "old" me to the best of my ability. Today I'm starting Ampyra after having myself thoroughly checked out for potential past seizures. My EEG is normal and no seizure type episodes resported so my doctor gave me the go-ahead just this morning to start Ampyra. I suspect this medication too will improve my quality of life by hopefully aiding my walking ability. I'm really looking up these days as taking ABC drugs were such a bummer and made me feel worse and I got rid of them through working with my doctors to have the best quality of life possible with MS.
The fact that any damage cannot be undone once it is done and its not just relapse makes me so skittish about giving up my meds. But hopefully the inflamatory stage of MS seem to quite down in late 50's or early 60's. I'm kind of hoping thats true & its not forever for me.
Interesting article that carry's a lot of wieght with me about this issue.....
http://www.mscenter.org/images/stories/InformsSummer09lowres.pdf
I would have a personality that works well with goals & delayed gratification. The gratification would not being as bad as I would have without treating it & ignoring it instead.
I found that the best medicine for this disease is to get plenty of sleep and to avoid stress as much as possible which is very difficult in the oil covered world we are now living in. ugh. :(
I think I'd be willing to try that new pill if it gets fda approved
I might be a bit misguided in my thinking but here goes my theory...
I have never tried any other interferon and have never had anything else prescribed for me to deal with any of this. I had my initial attack in 10/o8 and to date have only had 1 flare ( this past week)
I have come to realize for myself and with some soul searching as a couple with my wonderful husband ( AKA Superman) that Im just not "Me" anymore. We knew things would change, and I dont expect to be THAT Me anymore. But I do expect to at very least resemble my former self. I no longer do, not mentally or emotionally with the Avonex. I miss "Me" terribly as do my hubby and kids.
I'm tired of being tired, tired of feeling sick even if only slightly the dreaded day after. I take more excess crap to comabt the side effects from my shots than I ever did with the worse of colds for heavens sake! Im grouchy, easily upset, weepy weird, and just plain bitter.
I do feel Im dealing well, as does my Neuro.
THey dont know definitivly that this crap DOES work, it slows it, but isnt a sure thing. My MonSter is going to do what its going to do regardless of the flavor of the month meds, until there is a cure. Im obviously not progressing, so Ive decided to stop my injections. Im terrified, but I want to feel relatively normal again.
I switch to a new neuro the 2nd of July. We'll see what he has to say and go from there. I may return to the shots, but until then I need this break. Im willing to take the chance.
I believe this is a personal decision. I believe you know your body best and how you feel with or with out your meds. At very least I have the summer off of work (I work for the schools) and I have it feeling much better, I can keep up with my kids and ENJOY them. They need this from me, I truely belive they do.
I have a few twitches and a few itches.... no more, no less. Sorry so long winded.... and I know this isnt exactly from a more patient/medical stand point, but hopefully my thoughts will maybe give you insight from a person view. I hope you find the help you need from all the responses here, there are many great ones.
Be well!
I tried more natural approaches, spending years going to Naturopaths and other Doctors (such as a Rehab Doc)and doing my own searching in order to get a different perspective. It has not been an easy journey either, but the results have been excellent for me!
For the next few years after quitting Copaxone I continued to have regular relapses, had less return of function and new symptoms added on to my list. But now over the past almost 3 years, I have not had a new relapse and have improved a lot. I now live a pretty normal life and have energy to not only get through my day, but now I am beginning to challenge myself. Even before my diagnosis, I did not feel this good, I just have some relatively mild weakness, numbness and balance issues. It has been 20 years since the onset of my symptoms.
1) I have a more balanced spiritual/emotional life and a better approach to stress. I have also decreased the stress that I have control over. I try to stay connected with people who bring me up and I have also learned to be more of an encourager myself. I am quick to forgive others which I find is key to a healthy life.
2) I eat a balanced diet, limit or in some cases eliminate processed food, fast food, sweets, additives and things that I allergic to (wheat, gluten and dairy) and I am slowly increasing my excercise.
3) The biggest change was after getting my neck realigned. This was a process, but I saw a positive change from day 1. My nervous system appears to be functioning way better since then.