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View Full Version : What if I don't want to take meds?




Shadiyah
04-26-2012, 02:17 PM
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
04-26-2012, 04:17 PM
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/showthread.php?p=866839#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
04-26-2012, 04:23 PM
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
04-26-2012, 08:29 PM
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/showthread.php?p=866839#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
04-26-2012, 10:21 PM
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
04-27-2012, 06:33 AM
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
04-27-2012, 04:59 PM
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
04-27-2012, 06:08 PM
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
04-27-2012, 08:21 PM
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
04-27-2012, 10:13 PM
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.

missj
04-28-2012, 09:53 AM
Every person is unique.

My first symptoms started soon before betaseron was approved. At the time it was possible/probable dx. I remember the internist telling me that even it was MS that there was nothing he could do for me anyway. Like all of the MS patients that came before me, I would be powerless and simply wish for a treatment

The def dx came after AB and C were approved. So with the def dx came options.

The experience of having no options to changing to then having options was a big factor in my choice.

And to clarify, the bigger question for me is - Am I doing all I can to address this illness? To maximize my chances to be walking in the future?

For me I do more than just the injections. I am grateful for them but realize that they are not the magic wand to a cure.

good luck with your choices!!!

ANNagain
04-28-2012, 12:26 PM
Shadiyah,

Before taking AR&C, my MS was not stable. I had lots of exacerbations. My neuro put me on a gram of IV steroids once a month. I asked to come off of that after about 8 months. She said that if I could make it through the summer w/o needing steroids, she'd put me on a DMD.

I am grateful that things were stable enough (and I was determined not to take more steroids).

Maybe if your neuro could work w you and get you stable, then the meds would make sense. It would still be a choice.
ANN

Shadiyah
04-29-2012, 12:17 AM
Shadiyah,

Before taking AR&C, my MS was not stable. I had lots of exacerbations. My neuro put me on a gram of IV steroids once a month. I asked to come off of that after about 8 months. She said that if I could make it through the summer w/o needing steroids, she'd put me on a DMD.

I am grateful that things were stable enough (and I was determined not to take more steroids).

Maybe if your neuro could work w you and get you stable, then the meds would make sense. It would still be a choice.
ANN

Ann that sounds good. I didn't even think it was a chance of getting it stable. Really thank you for that little hope. I will ask.

Mariel
04-29-2012, 09:43 AM
Some will be irritated with me for pushing the Swank diet, but I HAD to go on Swank because I knew I could not try any of the MS meds. I'd already failed to be able to take Baclofen or Zanaflex, and my neuro put me on magnesium for spasticity, and that worked. Later I was dx'd with Porphyria, and now we know why I could not take a majority of meds (I can take some meds, such as the "Safe" ones on the Norwegian Porphyria Society list).

when I got another disease, Polycythemia Vera, I tried to take the meds for that, one of which was Interferon Alpha. But I could not do it without totally disabling side effects. So I quit, and I deal with this disease primarily with good diet and other healthy living rules....but I did finally take radioactive phosphorus to lower my platelets--the radiocative phosphorus (p32) does NOT affect me like the meds, but of course it has other dangers.

I recommend everyone try the Swank diet (low saturated fat) and also read labels to avoid MSG and other harmful additives, artificial sweeteners, etc.
Use your creativity to find things that taste good and don't hurt you!


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.

Shadiyah
04-29-2012, 10:32 PM
Some will be irritated with me for pushing the Swank diet, but I HAD to go on Swank because I knew I could not try any of the MS meds. I'd already failed to be able to take Baclofen or Zanaflex, and my neuro put me on magnesium for spasticity, and that worked. Later I was dx'd with Porphyria, and now we know why I could not take a majority of meds (I can take some meds, such as the "Safe" ones on the Norwegian Porphyria Society list).

when I got another disease, Polycythemia Vera, I tried to take the meds for that, one of which was Interferon Alpha. But I could not do it without totally disabling side effects. So I quit, and I deal with this disease primarily with good diet and other healthy living rules....but I did finally take radioactive phosphorus to lower my platelets--the radiocative phosphorus (p32) does NOT affect me like the meds, but of course it has other dangers.

I recommend everyone try the Swank diet (low saturated fat) and also read labels to avoid MSG and other harmful additives, artificial sweeteners, etc.
Use your creativity to find things that taste good and don't hurt you!

why would some be irritated with you about the diet? This is all new to me.

Dejibo
04-30-2012, 06:44 AM
The swank diet has done great things for a lot of folks! its a great idea. We really need to watch what we eat. We are a nation of obese folks who are so mal nourished because there is such little nutrition in the foods we eat. Just fat, and sugar everywhere you look. Your brain doesnt like that.

My disease progress changed dramatically when I stopped the junky food. My DD is celiac so while she was living at home, every morsel was carefully prepared. When she left for college, we went hog wild! it was then that I started having some Sx. I wonder how long it kept it at bay? Anyway, we cleaned up our diet, and the raging sx are much better. I can eat home made breads, or if I want mac and cheese, we make it, we dont dump it from a box. I am pretty close to the "makers diet" which advocates eating clean, foods that come from the earth, and making your own. We eat extreme little processed foods, and maybe once every 3 or 4 years we see mcburgers. usually its because we are traveling and nothing else is out there. A normal weight watcher meal is 8 or 9 points for a full dinner. a happy meal is 13 and thats a baby box of stuff. can you imagine a quarter pounder?

jprinz99
04-30-2012, 09:20 AM
Shadiyah-

Ony you can decide what you feel is the best course for you. I suggest talking to your doctor (neuro) and asking him to explain (in simple English)what (and how) the proposed medications he want to give you will work.

From all I have learned: In general, it is thought that the CRABs might delay progression in some patients with RRMS (and perhaps other forms of MS- who knows). Since we all progress differently they have yet to figure out to tell if someone progression or disability (or lack of) is just that person's unique disease process, or if it due to the medication's effect, or a bit of both IMO

YOU need to decide what you feel is right. I suggest learning more and asking pointed questions of trusted medical advisors. It is your body and your life after all. Either way, we will be fine with it ;)

Shadiyah
04-30-2012, 09:45 AM
Shadiyah-

Ony you can decide what you feel is the best course for you. I suggest talking to your doctor (neuro) and asking him to explain (in simple English)what (and how) the proposed medications he want to give you will work.

From all I have learned: In general, it is thought that the CRABs might delay progression in some patients with RRMS (and perhaps other forms of MS- who knows). Since we all progress differently they have yet to figure out to tell if someone progression or disability (or lack of) is just that person's unique disease process, or if it due to the medication's effect, or a bit of both IMO

YOU need to decide what you feel is right. I suggest learning more and asking pointed questions of trusted medical advisors. It is your body and your life after all. Either way, we will be fine with it ;)

:( I went for my appointment this morning after being in the hospital all night to find out I have a kidney stone and that they will not brake it up because it is only 4cmm.
Well anyway I get the the office and the front desk tell me that the doctor said there was no need to see me anymore???? Since you will be going to Jefferson's MS clinic you don't need to see her anymore.

Ok she is leaving the office this month so my primary wanted to get me in with Jefferson and so they said they will not give me an appointment until they get my records and my appointment may not be until July or August. I told the front desk why didn't she wait to talk with me anyway to see what I was doing? They said well she said she can see you on Wednesday if you want to come back??? No I don't want to come back since you told me what she said....

Who does that??? She is leaving and she didn't tell me that my primary did and he told me to ask her about it and when she was leaving. and I don't want to be past off to who ever is coming in the office. I have not had any sleep and now I have to wait until I calm down to get to sleep. :confused:

Mariel
04-30-2012, 12:05 PM
I'm sorry you've had rude treatment. You may need to talk to whoever comes to that present clinic, even if it's unpleasant, since the appt. at the new place isn't until July or August. Swallow pride.
My comment that some people might not want to hear about Swank again is that some people feel Swank does not help--they say they have tried it and it does not help. The "not help" may be due to them having a different form of MS than those of us who have received help from the diet. Or it may be that they did not follow the diet "perfectly." Swank says one must follow it perfectly at least the first year, then can make small exceptions. Over the years I followed it almost perfectly but finally did make small modifications, such as eating more eggs than Swank advises, which is the principle modification I made. Also I added other concepts to the Swank basic concept, such as avoiding "additives" such as MSG, artificial sweeteners, and other things you can see listed as Ingredients on boxes and cans. It is hard to eat out if you are on Swank unless you keep eating at the same restaurants where you are sure of their ingredients. It does take work, but it does not deny you eating good-tasting meals!

jprinz99
05-01-2012, 10:45 AM
What you are going through sounds very frustrating and I sympathize with you. Try not to let any of this nonsense affect your health or your spirit.

If anything, once you finally are at your first MS clinic appointment (after all the normal tell me this, answer that type of exam & questioning) perhaps you should gently but firmly convey that you "feel you have been handed around with no clear communication from any doctors to you - the actual patient." Stress sweetly(but firmly) that you are "sure that this won't ever happen here at the MS clinic"

This tends to get the point across that you are confused, a bit scared and desiring to be a true part of the team, if not the team leader, in how best to treat your case. I find this works well - Sort of a fresh start approach if you know what I mean. It also has the added effect of making you seem like you have been treated poorly by others in their profession - and thus they will want to make up for it. Sort of makes you human and not just another number.

Hang in there my friend!!

Shadiyah
05-06-2012, 12:30 PM
I got a phone call from my old neuro and she wants me to come in for one last appt. I was surprise that I got the call seeing who it went when I was at the office for my last appt. I guess she have to close all her cases before she leaves the office?

Well I feel good about what I have done. I have been sewing. I kinda know what goes on with me during the day at what times are good for me so I tried sewing again and it worked and I had fun.