For those of you who do not medicate

[AshNight]

Hi, this is a question for those of you who do not medicate, I'd just like to hear your reasons as to why? Also how do you feel on a day to day basis and what do you do to manage your MS and its symptoms? How long have you been off the meds for?

[Lois Shea]

I was diagnosed in 1969. I was in the hospital a lot taking IV treatments. I would get spotted swelling and get high on all the drugs.

After a few years I quit all treatments. I still had frequent exerbations but they didn't seem to be any worse without medication. I went about 20 years without taking anything then in 2008 they thought I had had a stroke so I went to the hospital. It turned out to be a severe exerbation so I was put on massive IV treatments.

I haven't taken any MS drugs since. I do take drugs for congestive heart failure. I honestly don't think things would be any better if I did take drugs.

Lois

[DianeD]

I am on Copaxone; not any better but holding off the lesions I guess. I am a skeptic and I didn't use any meds for 15 yrs. I've been on C for a little more than a year. I feel worse though neuro says my MRI shows no changes. I don't know then how I could be so much worse.

I had a very gradual worsening of symptoms; was essentially doing okay for 15 yrs. At least compared to now.

Now I'm always tired and just want to sleep. None of the symptomatic drugs help.

I feel like I'm about 1/10th of myself. I do nothing socially and I do things in my home as I can. Little by little I make headway.

I have no idea what the future will bring, but not feeling optimistic.

I just don't get why I feel so much worse with the Copaxone than I did off it.

Diane

[SNCL2001]

To med or not to med....

I was on treatment with Rebif for about 10yrs except when I was pregnant. I didn't realize how tired I was on the medication until my Dr. took me off it to get ready to go on Gileneya. I've been off it since Jan. I'm waiting for G finance approval but not sure I'm looking forward to going on it or back on any other CRAB if it doesn't get approved. I just answered on another thread that I'm doing pretty well with a mild disease course. Now is it so mild because I started on meds early in the disease? Does a person have to take the meds to keep it mild and feel (eh) or take your chances not take anything and feel better. That is a double edge sword/Russian roulette question...

[Marco]

I am currently not on medications, but probably will be in the next month or so. Two years ago, I had no desire to go on the medications. Unless, I could get an iron-clad diagnosis they were talking to the wrong guy. Since then, symptoms have become more regular. I also familiar with the signs and probably pay more attention than in the past.

Competent MS specialists still do not agree about my exact diagnosis and whether I am a RIS/CIS or MS patient.

Where does that leave me? Somewhere in limbo between being normal and having "full blown" MS.

-> I fully understand doctors do not have crystal balls and neither do I.
-> My body isn't "normal" and at some time, some thing(s) trigger(ed) my autoimmune system.
-> While my symptoms may not be "extreme" I will accept them as a warning sign.


Where do I want to be?


Well, I would like to be deep sea fishing in Costa Rica, but that would only tick off my boss. In 10 and 20 and 30 years, I'd also like the option to walk, fish or enjoy other pleasurable aspects of life. I'd like to be healthy and be able to be the man I want to be for my beloved wife.

So now, my answer is I will take the MS drugs. I know they aren't a cure, I know my symptoms will remain and new ones may arise. I know it's a pain in the butt (and other places) to inject yourself. I know once can only hope the progression is slowed, the number and intensity of flares is reduced and ultimately I will remain ambulatory. For scientists, it's all about statistics and probability ... for me, it's about fighting to maintain the best quality of life possible.

Maybe one day there will be a better drug for Multiple Sclerosis.
Maybe one day there will be a direct test for Multiple Sclerosis.
Maybe one day there will be a cure for Multiple Sclerosis.
Maybe one day there will be ... ???

Until that day ... I will accept today as a gift and tomorrow as a hope. I will fight to maintain my quality of life with everything I can. Fortunately, there is a medicine that statistically will help me fight better than I can without.



I can always elect to go off the medications, but I cannot go back in time 10 or 15 years and wish that I had.

[Marie12]

enter your meds @ [drugs.com]

Not just people with MS, but anyone who takes any prescription, supplement, vitamin. Please enter everything at [drugs.com] It is free, and if you want the entries saved, they can do that too, for a small fee. As an example, several years ago I was extremely sick, and it ended up being "calcium" which the dr told me to take, was interacting with a prescription drug. Jaundice for seven weeks, they took me off all medication. I did not know about [drugs.com] then. If I would have known, it would have saved me from seven weeks of extreme pain. The important thing is that you enter every single vitamin or anything you take. It specifically states any interaction and what should not be taken with that medicine. It's like a neurologist told our group at a meeting last year, for MS, we need to be our own advocate. I wrote that down to remember, because it is true. We need to be in charge, we can't just leave it in someone else's hands, now as horrible as we are with MS, we still need to be in charge. Spend a little time each morning when you have at least some strength, and spend the time on something that will help YOU. I know this is even harder to do since we were brought up to help others as our main goal. And I still do that, AFTER I help myself, or I won't be around very long to help others. So what you are doing to help yourself, is actually helping others. Thank you for your time [drugs.com]

[Waydwnsouth1]

My DW and I had a talk recently about this particular topic. I told her I probably would not medicate even if I were dx'd. Well then came the dx. After my new neuro told me the test my previous performed showed I had ON at one time, the prev. neuro said the results were fine but apparently not, but I may have not known it I decided to medicate. (It turns out you can have ON without loss of vision.) My sx's have been increasing so I just feel like this disease can take a turn so fast why chance it. I mean look at the possibilities. I was watching HOLMES ON HOLMES last night and he was rebuilding a wheelchair ramp for a man that had MS. The patient said it took just two years to put him in a wheelchair. He said the doctors took two years to dx him and in that time he ended up in the wheelchair. I know it is an isolated case but it can still happen. If taking a shot can give chance of helping I will take it.

[0485c10]

i know your not asking the ones that were not diagnosed so they did not take medication. I think you are asking for people diagnosed but have chosen to not use meds, even though they know they have ms. i just want to caution you in your analyisis to also ask which stage of ms they are in--perhaps how long they had MS and if they used a ms med before?.

in sp the meds stop working so many people chose to not use med---like jazzgirl but there are some in the RR phase who chose to not use meds...the most famous on this site is SNOOPY. many people use ldn instead of a conventional ms med, so you will find a lot of people there too...but ask about which stage they are in--if they ever used an ms med b/4 and if so for how long?. if they used a med in the past when they started being sp & the med stopped working for them, that could have caused them to stop....and now they are no longer using a med for ms but they did when they were RR. and remember there were no meds b/4 1993 so the choice of a med in RR could have been it didn't exist anyway? by the time it existed too much damage anyway to start a med..

about not using a med because of a late diagnosis,that's not the info you are looking for to help you make your decision, but for people who know and chose not to use a med you need to know previous use, to use that information to make your decision.

everything about ms is a pot shot, this question isn't gonna help you reach a decision either. i know i asked it myself trying to make a decision..

btw---when i asked this question i asked it to a group of people using ldn who did not disclose to me they were sp & i was furious when i found out there was no ms meds for sp and relapses stop in sp anyway then ms change to continuous decline without relapse in sp--instead they just told me they take ldn & they haven't had as relapse in # years. because of ldn, i thought? i didn't know much about ms it was in the first few months that i had diagnosed ms. i still get mad at my trust and how they didn't disclose their SP status when i was new to understanding ms. i don't know if anyone has done that to you here, i hope not, it doesn't sound like they did, a few sound like they could be sp already?...

take that into your consideration- that in sp relapses stop anyway. ms meds slow the frequency and reduce the severity of relapses.a person wrote one doc said that the purpose of meds in RR was to prevent as much incomplete recoveries after relapses to keep a person in as good of shape as possible, so when they start the stage where there are no meds to slow the decline, they start the downward decline in the best shape possible.

[0485c10]

actually not only some of the LDN people did that to me when i was trying to figure this all out..2 local people did that to me too. one guy in his 50's using a walker obviously sp, told me he used copaxone and hadn't had a relapse in l alot of years & there was a guy in his mid 40's using a w/c & copaxone and hadn't had a relapse in a long time...i thought it was copaxone doing that...be careful of where a person is in the ms disease when you ask about ms meds.

[Tracelyn]

I have been diagnosed over a year now, but had sx's for several years.

I was on Copaxone up until 2 months ago. I stopped taking the shot without speaking with my neuro. It first started as me just forgetting to take it.. then it led to me not wanting to take it.

I have felt wonderful for those 2 months. I have more energy and my sx's were less prevelant. I have every intention of speaking with my neuro next month of figuring out what I will do because a daily shot is not happening anymore.

I will admit in the past week I have started having that "buzzing" feeling in my legs and hips. I know that this is a warning sign, and I will take meds to help slow the progession, but I just don't know that Copaxone was doing very good for me. I had 2 flairups that resulted me being off work for 2 months each time.

Maybe I expect too much from the meds... who knows.

[opiegirl]

Hi, this is a question for those of you who do not medicate, I'd just like to hear your reasons as to why? Also how do you feel on a day to day basis and what do you do to manage your MS and its symptoms? How long have you been off the meds for?

Why have I never taken DMD's? I have always felt they were not the right thing for me. I was dx in 1991, so nothing was offered to me. But in years to come I was encouraged by every neuro I saw to start a med. Still deep down I couldn't do it.

I feel good on a day to day basis. Sure I get tired like the rest of us, but the side effects of the drugs always seem worse than the symptoms.

My symptoms right now are a numb left hand and a foot drop on the right that kicks in when I walk too much.

I exercise and eat a anti-inflammatory diet to manage my overall health.

Good luck in your decision.

[SNOOPY]

the most famous on this site is SNOOPY.

I'm famous!!!??? Really!!?? Probably infamous is more like it

Hi AshNight,

I have never been on the Disease Modifying Drugs (DMDs).

When I was dx'd in 1985 there were no DMDs. Betaseron was the first DMD to become available to the general MS population in 1993...by lottery. I did have a lottery number but when my number came up I decided to wait.

As for why I still don't use DMDs? I don't believe they work as well as we are told. Some who take the DMDs seem to do quite well on them, some still progress, some see no difference on or off of them and some feel they made their MS worse.

I have had 5 exacerbation in 26 years:

1985 -- severe
1986 -- severe
1994 -- severe
2001 -- mild
2002 -- mild

If I had been using a DMD at the time of the 3 severe exacerbations it would have been assumed the DMDs were not working. If I had used a DMD for the mild exacerbations the assumption would have been the DMD was working.

As it is, this has simply been the natural course of MS for me. I do have residual symptoms that go back to the very first exacerbation and yes, I have had some progression. Like many with this disease I have good and bad days.

I am not real big on medication in general but I will take symptom management meds when and as needed. Exercise has played a big part in managing my mobility, spasticity and pain.

Note: This is my experience with this disease. Each person will have a different journey with this disease and no one should compare their expereince to someone elses, this disease is just to variable.

[Lois Shea]

Back in 1969 the only treatment that I know of they had were HCTH IV treatments which were done in the hospital so I was in the hospital for a week for several years to take the treatments. I honestly did not feel that they helped.

About 20 years ago they started some new treatments but said they might help newly diagnosed patients but probably wouldn't help those who had MS for awhile so I never started any of them. I took nothing for ms from 1984 to 2008. At that time I was not able to do anything, they thought I had had a stroke. They discovered I had congestive heart failure and and an exacerbation of MS. They gave me treatments for my heart. Since then I have been on heart medications but nothing for ms although I have had lots of problems with MS during that whole time. I think each of us have to decide what is best for us.

Lois

[goddessmoon]

drug treatment

I was diagnosed in 1994 and have never been on the DMD's. Like others my neurologist has continued to offer them to me; knowing I wouldn't accept. He has always agreed with my decision not to use them. I do take other meds for symptom control such as Baclofen for spasms; Valium for the vertigo/dizziness and have pain meds on hand for those days when a plain old ibuprofen doesn't help. I just haven't felt like the drugs were the way to go. They don't "cure" the disease and can cause other problems; of which I don't have at the moment. I have had exacerbations through the years and have done oral steroids along with IVSM. I find if I can get rest everyday, avoid stress and stay out of the heat....all is good or should say manageable.

[Imagine]

I was diagnosed in 2008. I began using Rebif one year later and, to make a long story short, had a life threatening reaction.
I am to begin copaxone this month; to be honest, were it not for my 13 year old daughter-- I'm not sure that I would use this drug either. My husband is very supportive and would support my decision either way.
I believe it is important to note that my reluctance to the Rx is, for me, most likely due to depression... just sick and tired, tired, tired-- of being sick & tired.
My new mantra is: [I]I matter too. I know how important one's attitude is when undergoing any treatment... I'm working on it.
I do believe that undergoing tx is a personal decision, and should be respected.
Be Well. Love & Light... Shalom, Suzanne