[Shadiyah]

I came from the endocrinologist today and she said she didn't see anything but she will do the 24 hr urine test again. So it looks like it was just the steroids that shot my blood pressure up. I have not had any other issues with my bp since.

I told my neuro that I may not even go on any meds because she has taken this long to put me on any just trying to make sure I don't have any other issues. I just feel like this, if my symptoms never go away anyway so what would the meds do for me? I have these symptoms everyday since december. Only thing that has change since then is I am adding more symptoms on to what I already had.

So what do you think does it make since to start on any meds?

[ANNagain]

Shadiyah- I'd like to give you a thoughtful answer. I've read your 17 posts but I don't have a clear picture of what is going on w your MS. Clearly, if you do not want to take meds for MS, you do not have to take them.

Have you read Deijbo's "Drive your own bus" speech? I'm looking for it for you:

http://neurotalk.psychcentral.com/sh...839#post866839 Post 2 this has a lot of sense in it. Take what you can use from it.

Can you tell us more about the MS?

Best to you,
ANN

[missj]

I can't tell you what makes the most sense for you. The reality is that if we choose to take treatment, we choose to live with their consequences (both good and bad)
The same is true for the choice to not take treatment.

We can never really know what the difference would be.
But the beauty is that we do have the choice!

[Shadiyah]

Originally Posted by ANNagain

Shadiyah- I'd like to give you a thoughtful answer. I've read your 17 posts but I don't have a clear picture of what is going on w your MS. Clearly, if you do not want to take meds for MS, you do not have to take them.

Have you read Deijbo's "Drive your own bus" speech? I'm looking for it for you:

http://neurotalk.psychcentral.com/sh...839#post866839 Post 2 this has a lot of sense in it. Take what you can use from it.

Can you tell us more about the MS?

Best to you,
ANN

Thank you so much Ann that post was great. The only thing that I can add to that is I have only Medicare and these bills are adding up with all these test lol. but I rather know what is going on then not.
I am sorry you can not understand my MS, I am all over the place because my dr is lol.

[Erin524]

I tried the meds (copaxone) for a couple of years. Decided that it wasnt doing anything for me, and so I dont do anything but the occasional baclofen/and or valium for spasticity, maybe something for vertigo if I get dizzy, and then rarely, I'll get some IVSM for bad flares.

That's all I do.

My neuro has been great at letting me make decisions on my own about what I want to do.

[Dejibo]

Im glad you are thinking BEFORE they pump you full of whatever drugs are on the list. Even before I allow my MD to give me an aspirin I am careful to find out why, what for, and how long? Will it help? what are the side effects?

Is it that you are afraid of needles? side effects? depression? Please know the auto injector makes it so you almost never see the needle. They have meds for depression that work well in most cases. Do you think it wont matter if you do or dont take the meds? PLEASE read read read and read some more, before you make the choice.

Most of the DMDs if you read the hand outs say they have no idea how this med works, nor do they know the long term effects it has on a body. The studies that are done are sponsored by the drug companies themselves.

That being said. I chose to take Betaseron when I first started my journey. I was left with more questions than answers, but I took it anyway. 4 months later my liver function studies were so bad I set a clinic record. I started naturopathic stuff and demanded to get a wash out period before starting the next drug. I went on Copaxone, and stayed on it for about 4 years. it was ok in the early days, but about year 2 I couldnt think, I was exhausted. I had HUGE dents in my fat pads where I was shooting this med. I switched from auto injector to manual shots. I tried heat, ice, massage, no massage, oils, no oils, and in the end I was so spent I decided to take a DMD (disease modifying drug) holiday. After 1 week, my energy started to return, my brain fog started to clear. At week 2 I had enough energy to start walking again, and have sense enough to prepare meals and meal plan. I laid down the needles and havent looked back.

Now, that being said, you put yourself at a risk of more frequent attacks from the disease, and if you have these attacks they can be longer and stronger than if you were on one of these meds. Is this the attack that will get your optic nerve? or take your ability to balance? steal your words?

If you are going to chose a different path, please dont just sit back and chew on bad food, never exercise or sit and wait for this disease to come get you. Eat great food! walk at least a half hour EVERY day. Even in the rain, the snow, the tornado weather. it keeps your blood pumping and your brain healing. do mental puzzles, or things that keep your mind engaged. Sew, puzzles, games on the computer. Read! if your eyes are bad, ask your local library about audio books. Most have an online selection to listen to.

Many of us chose to take the meds, and while some have almost no side effects, some shoot thru the pain. Others say ENOUGH! and drop their needles in favor of more natural options. PLEASE speak to your MD about both sides of the fence. Do some research. Know what you are asking for, and in the end please know that no matter which lane you choose, it can be changed. If you choose no meds, you can always change your mind. if you choose meds and they are too much, you can always change your mind. Even tho I had a HUGE attack that made me blind for months I still dont think I could go back to being on the DMDs. i was just too sick. In the end, the choice is yours.

Let us know what you find out, and what you decide.

[Shadiyah]

Originally Posted by Dejibo

Im glad you are thinking BEFORE they pump you full of whatever drugs are on the list. Even before I allow my MD to give me an aspirin I am careful to find out why, what for, and how long? Will it help? what are the side effects?

Is it that you are afraid of needles? side effects? depression? Please know the auto injector makes it so you almost never see the needle. They have meds for depression that work well in most cases. Do you think it wont matter if you do or dont take the meds? PLEASE read read read and read some more, before you make the choice.

Most of the DMDs if you read the hand outs say they have no idea how this med works, nor do they know the long term effects it has on a body. The studies that are done are sponsored by the drug companies themselves.

That being said. I chose to take Betaseron when I first started my journey. I was left with more questions than answers, but I took it anyway. 4 months later my liver function studies were so bad I set a clinic record. I started naturopathic stuff and demanded to get a wash out period before starting the next drug. I went on Copaxone, and stayed on it for about 4 years. it was ok in the early days, but about year 2 I couldnt think, I was exhausted. I had HUGE dents in my fat pads where I was shooting this med. I switched from auto injector to manual shots. I tried heat, ice, massage, no massage, oils, no oils, and in the end I was so spent I decided to take a DMD (disease modifying drug) holiday. After 1 week, my energy started to return, my brain fog started to clear. At week 2 I had enough energy to start walking again, and have sense enough to prepare meals and meal plan. I laid down the needles and havent looked back.

Now, that being said, you put yourself at a risk of more frequent attacks from the disease, and if you have these attacks they can be longer and stronger than if you were on one of these meds. Is this the attack that will get your optic nerve? or take your ability to balance? steal your words?

If you are going to chose a different path, please dont just sit back and chew on bad food, never exercise or sit and wait for this disease to come get you. Eat great food! walk at least a half hour EVERY day. Even in the rain, the snow, the tornado weather. it keeps your blood pumping and your brain healing. do mental puzzles, or things that keep your mind engaged. Sew, puzzles, games on the computer. Read! if your eyes are bad, ask your local library about audio books. Most have an online selection to listen to.

Many of us chose to take the meds, and while some have almost no side effects, some shoot thru the pain. Others say ENOUGH! and drop their needles in favor of more natural options. PLEASE speak to your MD about both sides of the fence. Do some research. Know what you are asking for, and in the end please know that no matter which lane you choose, it can be changed. If you choose no meds, you can always change your mind. if you choose meds and they are too much, you can always change your mind. Even tho I had a HUGE attack that made me blind for months I still dont think I could go back to being on the DMDs. i was just too sick. In the end, the choice is yours.

Let us know what you find out, and what you decide.

I am not afraid of needles but I have read that the meds are to help not have attacks but my attacks at this point never stop. So I just don't see no need to take them because what would they do for me?

I am on a pain management for my back which is helping for all the pain that I get for the most part. The only thing that is becoming more and more to bare is the tremors. I will try to walk more that is something that I can do.

[Jules A]

I think just the title "what if I don't want to take meds?" is something we can all relate to. I would bet not one of us wants to take meds.

In my case I feel obligated to do whatever I can do to slow the progression of this miserable disease. If I had horrible side effects that affected my quality of life from all of the available dmds I would stop medicating however at this point I have been blessed to have minimal side effects and what I pray is a positive affect.

If you don't have RRMS I don't think the medications have been adequately tested or shown to be effective so I also might not be inclined to take one if they aren't shown to at least have some possible benefit. Nothing about this disease is easy.

[missj]

when I was on Avonex and needed to find courage to inject,and did not 'want' to take the med, I summoned courage by asking "do I 'want' to be walking in 20 years'? and "I am doing all I can to put those odds in my favor?"


It is a very difficult and very personal decision

[Shadiyah]

Originally Posted by missj

when I was on Avonex and needed to find courage to inject,and did not 'want' to take the med, I summoned courage by asking "do I 'want' to be walking in 20 years'? and "I am doing all I can to put those odds in my favor?"


It is a very difficult and very personal decision

I have injected myself before and I know some can't do that. and I really do not want to stop walking but for me it just seem to be a waste of time and money. my symptoms never go away and just seem to increase.

so I am just trying to be realistic about my situation but get some feed back from some of you that have been doing this for a long time. oh and I forgot to add that I am 51yrs old all my kids are grown and I am a grandmother to 4 I just want to be realistic.