Hey Everyone:
Since I am in the middle of a Flare I am thinking of everything I can do to get through it and not have any lasting side effects (like keeping my ability to walk without a cane). I have to decide by next week what DMD to start upon again. And here's my thing...I don't have a preference, I don't care if I have to shoot myself daily, weekly, if I have flu like symptoms or something else from the shots. I just want the drug that will best fight my MS and I have no way of knowing what that is...
So I ask you...what DMD do you use and What makes it the BEST?
And I also wonder if anyone can speak to diet changes, exercise, yoga and chiropractic or other lifestyle changes to get healthy. I am open to all suggestions and opinions here...please comment away!
Thanks ~ Lanette
4 comments:
Hi Lanette:
I've blogged about a few of the things you mention in your post.
First, I must tell you that I take no injectables or pills for MS. It is a personal choice and I do not push my choices off on anyone. It is what works for ME! It doesn't mean it will work for everyone.
With that said, everyone's MS is different - no two are the same. My symptoms are not your symptoms - the severity of symptoms varies with each person. Some are very affected by symptoms to the point where they can't function without being medicated for pain so they can work; others can't work because their disability has progressed to that point.
Here is what I had to say in a recent post about diet and lifestyle:
http://disablednotdead-anne.blogspot.com/2008/08/sharing-between-msers.html
I also have RA so that is a complication of my MS. Not many people have been dx'd with RA and MS but there are people out there walking (crawling) around with those symptoms and docs attribute it all to MS when there could be underlying diseases.
Here's what I wrote about how I manage my MS:
http://disablednotdead-anne.blogspot.com/2008/07/there-has-been-some-talk-recently-on.html
Again, read everything you can - anywhere you can before making any decisions on DMD's. And again, my regimen is not for everyone - but it works for me.
Chiropractors can help or hurt - it is a personal decision. If you have been helped in the past, chances are it will still be beneficial.
You say you don't care about daily or weekly injections (some are monthly!), and/or flu symptoms. Trust me, once you get into the DMD regimen, YOU WILL CARE because you will have to treat those symptoms. All DMD's come with baggage - good and bad. Most come with the need to pre-treat with pain med (usually Tylenol, Advil, etc.) and/or antihistamines (Benadryl, Claritin, etc.) to stave off the worse of the side effects (flu symptoms, aches & pains, etc.)
You will get many testimonials about how great each DMD is to each person. Again, it is all individual - what works for one, doesn't work for all.
Those who are disgusted with a certain DMD will most likely tell you about their bad experience, while others who have had great experiences will champion the DMD.
Okay, enough for the soapbox for today.
Happy reading!
Anne
http://disablednotdead-anne.blogspot.com
Hi Lanette,
I second the sentiments which Anne has spelled out. So many individuals, choices, opinions, etc.
You asked me WHY I chose Copaxone so here's a very major reason why -
I have struggled with depression for years and have it pretty well contained. The interferon drugs (Avonex, Betaseron, Rebif) have increased depression as one of the more significant side-effects.
Although not everybody will experience the same side-effects, I didn't want to risk potential increased depression to all the other stuff I had to tackle along with MS.
It was a personal choice. Also, the idea of daily shots was kinda nice in that I wouldn't have to think about it much, just do it.
It takes awhile for the DMDs to build up effectiveness, but once it did for me, I went almost two years before another relapse. On MRI, no change was seen in my brain and in my neck it looked like two lesions had joined into one large one. But my neurologist was quite pleased with the lack of new lesions after two years.
At first I did experience injection site reactions - stinging, red welt, hard lump - which were manageable and lessen over time. Another side-effect was an increase in PMS symptoms. I was CRANKY and IRRITABLE with each period, but that too has lessened.
Copaxone is supposed to work as a decoy for the cells which attack the myelin. The attack cells will bind with Copaxone instead of with myelin cells, so the theory goes.
I can't speak to the other drugs because I've not tried them. I have found that yoga is good for the body and soul. Full body massage is also nice although it doesn't 'treat' MS.
Like Anne, I also have RA. There are some foods which trigger increased inflammation so I avoid them. I don't personally have the will power or desire to try to stick closely to anything like the Swank Diet, so again can't comment.
Good luck with your decision. Feel free to ask any more questions. I'm happy to try to answer.
Lisa
Hello, I do not have MS, however I know a few people that do that go to my chiropractor. They absolutely love it. I think you have to find one that is into the complete healing of the body (mind, body, spirit) and that knows about MS.
If you know someone that can recommend a good doctor that's great. If not then I can give you my doc's website and he should be able to recommend someone near you. He is part of an organization of chiropractor's that believe in and study healing the whole person.
Thank you for sharing your story.
Hi! Lanette
I came across your blog through Anne at Disabled Not Dead.
I can't say what will make you healthier. My strategy is to keep myself as healthy as possible in order to cope with the MS.
I don't have high blood pressure or cholesterol, no blood sugar problems and my heart and lungs are sound. I'm certain my diet and exercise routine is the reason why.
Chiropractic, massage, acupuncture etc. won't cure your symptoms but may help alleviate them.
As for the drugs I'm very cautious about taking any medications and have only recently started Amantadine for fatigue. I did it out of desperation !
I'm not convinced that the DMD drugs do anything however it's not for me to say that you shouldn't try one.
The best you can do is to ask lots of questions, do research, and then decide what to do.
And keep blogging You have a good blog.
Bye
Carole
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