If you're NOT taking the shots or pills...

[marti]

.... how are you "treating" your MS? I recently was taken off the Copaxone shots because my neuro believed they were not doing much good anymore. She believes in MS "burning itself out" in some patients.

I got to thinking that since I'm not taking shots or pills I am really not being treated for MS anymore. So what should I be doing??

[JerryD]

If your doctor suggested that you quit your current med, maybe you should get this answer from your doc. Good luck

[22cyclist]

I agree with JerryD Marti, you should discuss this with your neuro. Tell them you don't feel comfortable not taking something for your MS. Ask them if they feel like you are in secondary progressive? Even so, there are medications to help with that. I wish you the best!

Take care
Lisa

[marti]

Yes, I will see her in August. I just wondered if anyone who was not taking the DMD's was doing any kind of homeopathic or "natural" experimentation. I'm not totally sold on that kind of thing, but I wondered if anyone else had any input.

My neuro used to tell me I was Progressive Relapsing. Then she went back to RRMS. Now she just feels that the Copaxone was giving me too many strange side effects and was not "effective" anymore.

I am not in terrible shape. Lots of pain and weird symptoms, like everyone here. But my symptoms are non stop, every day and a little worse than they used to be.

I was surprised she didn't try to talk me into trying something else. But I'm really not disappointed. Knowing that we patients know more about this thing than the doctors makes me wonder what other people are doing without DMD's. I know there are a lot of folks who elected to NOT take them at all.

[Pipes123]

I looked into this. My diagnosis was a shock. I did not want to be a patient and I did not want to take drugs.

Re non med treatment... Vit D has a lot of research to support it. Exercise over no exercise, including aerobic, weight lifting and low impact like Feldenkreis, yoga or Chi Gung. Diet has the benefit of avoiding the double blow of preventable chronic conditions which are worse with ms and make ms worse. Not Smoking. Antioxidant and phytochemical nutrients (diet again) make us healthier in ways we don't understand fully, but the research is measuring it. Mental exercise and social interaction are both good for brains.

There is a lot we can do... and incrementally we may gain years vs doing nothing. But ms is a bugger of an adversary. There are lines of research into antiviral and or anti bacterial meds. Hormones... worms... there is some published evidence.

That, and meditation for emotional coping skills (also prayer) are as far as I go, because that's as far as I could find research. I don't know whether this is what you wanted... I do take drugs.

[oceanpride]

Eastern Medicine

Hi Marti,
i'm ppms so I never ever had a choice.Diagnost in 2005 with symptoms going back , medicaly recorded , for 10 years before that . I was going downhill pretty fast when I finally went to see about things . I was told bluntly "you've got MS, theres no cure, there's no medicine , there's nothing we can do for you"

About two months later I read in the local news paper, about a girl who had MS. She seeked Chinese medicene, took it and studied to become a doctor of chinese medicine, and was now practising,

Long story short , she has been treating me now for over nine years . My progression slowed and i'm still walking, working every day, able to do all kinds of chores ,still ride my Harley, chop wood, go hunting , fishing, take vacations.

Don't get me wrong, I still have lots of symptoms, and have a lot of difficulty, but she's keeping them at bay. Is it just the nature of the beast, or is a regimented, regeime of acupunture and chinese herbs actually allowing my body to fight this.I don't want to sound like a snake oil salesman so I won't go on

I would highly recomend you find a true doctor of eastern medicine and start treatment . Do be careful , there is a lot that arn't qualified , good luck.

Richard

[marti]

Hi Marti,
i'm ppms so I never ever had a choice.Diagnost in 2005 with symptoms going back , medicaly recorded , for 10 years before that . I was going downhill pretty fast when I finally went to see about things . I was told bluntly "you've got MS, theres no cure, there's no medicine , there's nothing we can do for you"

About two months later I read in the local news paper, about a girl who had MS. She seeked Chinese medicene, took it and studied to become a doctor of chinese medicine, and was now practising,

Long story short , she has been treating me now for over nine years . My progression slowed and i'm still walking, working every day, able to do all kinds of chores ,still ride my Harley, chop wood, go hunting , fishing, take vacations.

Don't get me wrong, I still have lots of symptoms, and have a lot of difficulty, but she's keeping them at bay. Is it just the nature of the beast, or is a regimented, regeime of acupunture and chinese herbs actually allowing my body to fight this.I don't want to sound like a snake oil salesman so I won't go on

I would highly recomend you find a true doctor of eastern medicine and start treatment . Do be careful , there is a lot that arn't qualified , good luck.

Richard

Thank you Richard. This is really encouraging to hear. I know there are a lot of people who never took the shots and never will. I guess we are all just rolling the dice. But it just didn't sink in that now that they took me off the meds, I was on my own. I take a few drugs for symptoms when I need them. But for the most part, I stay away from medicine. I know people find herbal things that help them to kind of ward off the effects of the disease. No cure. But maybe some help. Glad you found someone to help you. And I'm proud of you for being so active.