There is a discussion: Anyone on Meds that has 12 replies that really would address your question if you want to read them. k

Its very interesting what you describe & its what we all wrestle with. The meds are to prevent a future we don't want. But we may be treating a future we never would have gotten? I had my first symptom of ON undiagnosed, MRI were not available until then. The opthamalogist told me it could be MS...the internet wasn't around then either. So I didn't look up what MS was. I moved around in 5 five state and no one including me tied some strange things I complained about to MS.

So it wasn't for 19 years until my balance went bad, the right side of my body would not work correctly, I was slurring speech, I was badly incontinent that I went to an ER they said it was a stroke or MS. Ran an MRI and told me within 2 hours it was MS and I had it for a long time based upon my MRI.

Then I remembed what that opthamalogist told me. The neuroligist told me I had better take this seriously because it was a multi symptom episode.

Still I refused meds for 8 months, I hadn't needed meds for 19 years. That set of a year from hell with frequent relapses until I started a med and it settled down. It was the threat of the losds of my drivers license by the DMV that convinced me to start a med & keep my DL.

But they told me in those 2 hours that they diagnosed me, that because it didn't become visible enough for a diagnosis for 19 years it is a "milder" case of MS. Notice when discussing MS its always comparisons? an "er".

Its a lot like accelerated aging. I'm dealing with a lot my friends will deal with in another 30 years or so.

I think in another 30 years or so, I won't recover as easily from the normal issues of aging.

The meds are just trying to be better than you would have been without the meds. Its a competition with your own unmedicated future self. And its vexing. Because your future self does not show the full hand they are holding in this game of cards.

The first woman to die while using Tysabri, from Tysabri, it turns out on autopsy she did not have MS. It was medication for the treatment of a disease she did not have that killed her. She was determined to avoid a future she did not want by using the most advanced meds available for the disease. And it turned out she avoided any future.

The meds available for the RR stage. I read one doc said the purpose is to reduce relapses and the "incomplete" recovery from them in the RR stage so a person is in as good of shape as possible when they get to he SP stage where treatment isn't available.

And I read another that said the treatment is a quality of life issue. The year I was having frequent relapses, really affected the quality of my life, RIGHT NOW. So the meds were an important quality of life issue....my MS was active and I needed Meds. But given my late diagnosis and "milder" MS, I often wonder if the MS meds have to be taken all the time or just when it is active and affecting the quality of my life with frequent relapses and not all the time?

I too wonder about what you ask. And the damn thing is there is no answer. A person can't do both and see how it turns out each way :(

Your profile says you left employment in 2007 because of a more severe induced MS exacerbation. Who know if that would not have happened if you took meds?

We know what happened to your future self that did not take meds, but we do not know what would have happened to the future self that did take meds....

BTW I was diagnosed in a period of job stress with two company downsize with me losing my job in the second one. If it wasn't for that stress I wonder if my MS would ever have become visible enough for a diagnosis? Perhaps I would have withstood the stress of the economy better if I had been diagnosed & on meds before 19 years after onset? I'll never know & now I am on meds, I'll never know what I would have been like with out them.....FRUSTRATING SITUATION!

I do know the recovery after relapses is becoming less. And the relapses are decreasing. As is normal in RR progression. Go to my profile and I have two interesting graphs about relapses, recovery after relapses in MS progression. Print it out and identify where you are at on the chart.

Perhaps you really don't need meds, but once it gets to SP they are not an option. Are you in early RR or late RR? With a chronic illness, the longer the time a person lives with a disease without being disabled is a sign of the degree of "milder" it is.

The amount of time does not say which part of RR you are in.

The disease doesn't go by seniority. Some will advance quickly through early RR to late RR other people have a disease that progress slower through early RR to late RR.

Check that chart out and look at it over a few days. I did it was helpful. Over about a month each time I looked at it I saw something new about RR progression. Set it on the kitchen table and look at it a few times over a month.

I have read articles that the pace of ones MS remains constant throughout the disease. Damage is additive. New damage builds on top of the old damage, so it seems like it is going faster near the end, but its the same pace as it always has been. Earlier when there was less damage to build on, a relapse might not have bothered the person much, they might not have even noticed,but later the same relapse builds on top of old damage and the relapse affects the person very much. Is very noticable!

Perhaps YOU really don't need meds? Were just competing against our own future self. 'medicated Future self' versus 'unmedicated Future self'. Its a shame we can't know the outcome of both to compare :(

We are gonna be affected by MS, so we are NOT gonna be better than a healthy person without ANY chronic illness. Which ever 'Future Self'
we become, medicated or non, we are gonna be a 'Future Self with MS'. We will be affected by MS either way.

Thanks for responding - khills and nny1. Just to clarify my employment status - I decided to go into private practice after my last serious MS exacerbation - many reasons including toxic working environment (people that are new hires continue to leave ASAP - going into private practice was an excellent choice for me because - I am not overloaded by unreasonable caseload; have more control on who i see and when, etc.
I actually have a client who is trying to go onto disability (SSD) due to her MS, which is affecting her intellectual functioning as well as her ability to move.

I definitely plan on looking into research regarding the medications available. Thanks. Deb

As self employed person is insurance with MS a problem. I did qualify for SSDI then medicare, but after I lost my job and had to go on the independent insurance field there is no way I would have been able to pay for my meds. It was a part of the reson I refused meds for 8 months. When I finally agrred to them, the doc gave me a prescription assistance applicaction to fill out. With no source of income at all, I qualified. My drug cost was the FDA EX charge to mail them every month.

I still qualified when I got SSDI, as it was my only source of income.

Then I got medicare, with the donut hole and I still qualified. SSDI isn't a lot of $, above poverty but still low enough to qualify for prescription assistance. Then my doc switched me to Tysabri which is covered under Medicare Part B.

That's were I sit now, still playing it by ear. Glad its covered and PA programs exist. Are finances a problem for you in your research?

As a person who has spent very many years trying to stay in remission without taking typically prescibed drugs, this is what I have been doing for almost 5yrs, with good results;

low dose naltrexone @ bedtime 3.5mg
made into a liquid form, the cost is less than $10.00/month & no needles or side effects

IMO~From what I have read and people's experiences on this site I would take the drugs like Avonex, Betaserone, Copaxone or Rebif. My neuro said that most people usually go to spms after 10 years before these drugs became available. It really is important to slow the progression of this disease when you are in the rrms stage.I have had ms for 28 years and was already spms so the only option is chemo drugs. You may feel fine now and think it will not get worse but that is not the case usually. My opinion for what it is worth is to take the drugs!

I don't think that you are carazy. Just not sure. I tend to agree with you about medicartion. I don't believe that we have enough research on it to be sure it really helps. Experts will show statistics to prove a point but stats can go both ways often. I take vitimans and eat healthy along with exercise and it seems to be helping me. Of course a posative attitude always helps.

I too have had trouble with the idea of needles. I am not sure if the research they have on the medication therapy is as conclusive as it could be. I just eat healthy and exercise and always keep a positive attitude. it seems to help.

I am not sure about medication either. We haven't had it long enough to really know. I eat right and exercise. It seems to help.

Hi Deb: I recently became a member so hope I am doing this right! I have not taken any treatments for MS. Due to many allergies to drugs Doctors felt trying different things could make matters worse so the only thing I take is baclofen for muscle spasms. I take 4 (10 mg) a day.
So far I am still walking without aids although I do have a scooter if there is any extensive walking involved. My main problem is weakness and fatique so naps and I have become best friends. The main thing to understand is not to over do -- you know your body better than any one, so when it tells you you've had enough stop and listen and rest. Wishing you all the best. Hugs: Arlees

Hi Deb -- I can definitely relate!! I was diagnosed in 1987 and have for the most part been able to manage symptoms w/o meds. (Only took corticosteriods for a few days when originally diagnosed -- otherwise, just herbs, diet & vitamins.)

Even though I've suffered from a lifelong phobia of needles, I finally agreed to start on Copaxone last year. What convinced me was not so much the management of physical symptoms (I've learned to compensate for these), but the fact that my neuro told me that the meds not only delay relapses but also protect against cognitive defects - one of my main worries, as I've noticed my ability to concentrate and memory have been quite severly conpromised over the past couple of years.

Even though I'm not the most compliant patient ever (miss quite a few doses each month!), you do get used to the injections. Even the allergic reactions (big welts, itching, etc.) do eventually lessen with time.

The only thing I really dislike about Copaxone is that it's a daily reminder that I really do have MS. (Denial has long been my favorite coping strategy!) Would I remain just as well without the meds? Who knows, but I'm finally starting to admit that other people (i.e., my neuro) may know some things about this condition that I have not been willing to face.

Hope this helps ... Kate

hi Deb,

I'm not and never have been on any of these drugs either nor steroids for that matter.

I still manage to get around but I had to stop working after having three episodes of transverse myelitis.

I too hate needles. I had one embedded in my leg once and did not know it until pain/infection began with me. I can barely stand a simple blood test without passing out.

I am 53 years old and I am fortunate I believe. I've been told I have a slow progressive form of the disease they seem to think. I don't bother with neuros - an incompetent lot where I live and elsewhere nearby best I can tell.

I go to an internal medicine doctor and take vitamins and use as many chemical free things as possible. I also try to eat as much organic food as possible. I also take vitamins and use various herbs.

I'm not going anywhere any time soon best I can tell. ;o)