Are the Meds worth it

[ibkensayers]

I was diagnosed with MS back in 2003 which really scared me. After a couple months I pretty well recovered with only a few minor lasting affects. I was placed on Beta Seron back then but I ended up discontinueing use against the advice of my doctor. My reasoning is this: 1. I do not like injections with lasting aches and pain.

2. I felt depressed and very low sense of energy.
3. MS is such an ambiguous disease that I am not really conviced the medication was doing any good anyway. The best thing that the medications claim is to reduce the progression of the disease which is something that nobody can predict.

Now many years have gone by without any flareups. Recently I experienced some distortion in my vision which the eye doctor said said was probably an optical migraines. Same simptoms my daughter has before getting a head ache. But he sent me to a neurologist for some testing. The Neurologist consentrated on the fact that I had been diagnosed with MS and ordered 4 MRI's and an EEG. After reporting my vision distortion, my employer put me out of service so that I couldn't return to work until checked out since I am a CDL driver. I am the primary income for our family and my being out of work during this caused major panic.

After all the test the doctor determined that I was still fit to drive commercial vehicles for right now, but he wouldn't release me to go back to work without my agreeing to treat the disease. He wanted me to go back on shots completely against my will. Reluctantly I agreed, but I have mixed feelings about the whole thing.

I take care of my body with proper diet and regular exerice and for a 47 year old man, I'm in pretty good shape. I do not like the idea of a doctor forcing me to inject fluid in my body which is probably going to cause me to feel depressed and lethargic. All for the purpose of preventing the progression of MS which to the best of my knowledge has not been progressing for me at all in 8 years. Treatment will not only cause unwanted side effects, but the financial burden of medications and doctor visits will cause a strain on our finances which are already so sparce. Once again I am thinking about just rejecting what the doctor is advising which I don't like doing. However, I really would like to here from others with MS. Are the medications worth the side effects when I haven't been having problems?

Sincerely
Doubting Ken.

[mscamillec]

Hello Ken,
i hate to say this but you need to do what you feel in your heart how to manage your ms. even if you agree with the shots and not do them that's fine too. I dislike them and all does not agree with me considering i relapse regardless. I will not do the tysabri although my docs seem to push it. i went to all the specialists and yada, yada, yada , even went to the specialist whom sent me to 3 doctors for clearance for gilenya (the pill for ms) and all 3 docs approved but the specialist said i rather you go on tysabri after spending all the money on copays etc... she wasted my time as well. i wish you well, as well as had an answer for you because i am in the same position.
take care,
Camille

[Blessings2You]

I'm trying to get my mind around the idea that your neurologist has stated that you are fit to go back to work, but he won't release you to go back to work. He seems to have a lot more confidence in the DMD's than statistics indicate. That's almost extortion, isn't it? Either you're fit or you're not.

[gomer]

As already said, YOU have to do what YOU are most comfortable with, not an easy choice.

I have had MS longer than most, a complication going back to 1964, just was not formally Dx'd, that I knew about. I had been going down hill for a few years and forced to return to regular doctoring. Even then it took several years before the formal Dx. My mobility had been suffering for a good decade and getting worse.

One of my fears for a few years was ending up confined to a chair and bed. So when I had a chance to at long last FIGHT back for a change I welcomed the chance to slow my MonSter down. (I can be a FIGHTER).

I researched all the MS drug options. I chose Copaxone, WHY?

#1 Side effects for one, I did not want the down time, as long as i could avoid it.

#2 I am not fond of IM type shots, been there done that.

#3 I am diabetic on a typical type-1 routine (MDI) multiple daily injections, for a non-pumper, so for me it was just another shot every day. The needle while larger than today's insulin needles, its still smaller than they were when I started insulin shots 3 decades ago.

#4 There is no way to tell for sure which DMD might or might not work for any specific person, its a CRAB shoot, so why not go with the one that fits ME & my life best.

So far I am doing far better now than I was 2 years ago when I first started Copaxone. No I am not running any marathons or anything, I still use a power chair part-time every day and a scooter for out and about, but my limited walking is BETTER.

Gomer Sir Falls-a-lot

[Carol]

Hey Ken,

You didn't say how the MRI's turned out. Were the vision problems caused by MS?

I had my first flare in 2000, second in 2006. I'm 54 and in as good a shape or better than most of my friends. I've never taken a DMD and unless there is a drastic change, don't intend to start. My MS is mild with few symptoms.

It should be entirely your decision, based on research and your choices. Is the possible benefit greater than the possible downside of each choice? My GP always talks about the risk/benefit ratio. Your Dr. sounds like a bully.

C

[BigA]

Ken,
your doctor is an inflexible pedant. There are some neurologists who won't treat someone unless they get the drugs. I take interferon, but the evidence is mixed whether any of them truly delay progression.

I would simply find another doctor and be straight with him/her. The fact that you've gone so long without noticeable progression describes the natural history of your MS. I assume the MRIs came up clear as well?
If you must take meds, copaxone will have the fewest side effects. You can also get copay assistance so that it's not a burden.

Obviously, providing for your family is the most important thing. If you must, Avonex has the fewest shots and the smallest box

[pjsSissy70]

Ive had MS for 20yrs now. For 19 of those years I was not on any dmd's. I did betaseron for about 9 months and the side effects were horrible for me, so I quit it. That was 10 yrs ago.

Present day, I have had 2 huge flares, one last october and then again in december. Now I have some permanent disabilities. Doc told me that now its time to get on a dmd and stick with it. I agreed.So Im on copaxone. I was given a choice between that or gilenya or ty. Copaxone has the least side effects. Those 2 flares scared me to death. If I can help prolong those, Im going to try.

Deciding to go on a dmd is a personal one, but dont let your doc pressure you into doing something you dont want to do. I feel good about my decision to not take any dmd's for that period of time. I had very little problems. Didn't see the point. Took me 20 yrs to have a huge flare. So I think I chose right for me.

[Bob698]

This is why its important to understand what MS really is.
Don't focus on the flare stuff, focus on what's happening to your nervous system. That's tough to do because we can't feel that kind of damage BUT its what's causing all the other problems.
Untreated, damage tends to be on-going.
The DMDs can be a pain but its pretty insignificant compared to what else could be happening.

[rdmc]

So Ken, the one thing I didn't get from your post was what did those MRIs show.

Is that what your doctor's basing your need for meds on?

If I can play devil's advocate, your doctor is taking some liability for saying it's okay for you to go back to your job...especially since being a commercial driver does carry risk to yourself and the public. So I wonder if he saw something on the MRIs that convinced him you needed to be on a DMD in order for him to feel okay about agreeing you're able to return to work.

I was off DMDs for about 5 months recently (long story, but it was medically necessary to come off.) I ended up with quite an array of increased symptoms, so now I'm able to be back on them, and I am. But the truth is, no one's story is really relevent because everybody's different, the DMDs affect everyone differently.

But what it does boil down to is this. It's true no one can force you on a med, but if the condition for keeping your job means you have to be on a DMD, then it seems like the choice is yours...take the DMD or find another job, or neurologist who won't make you stay on a DMD as a condition for signing off on your work permission. And be aware your neuro will probably be advised by the drug company if you don't take the med (i.e. if you're thinking of agreeing just to get the doc to sign off on your returning and then don't intend to take the drug.) That happened to me when I quit the DMD (it was through orders of a doc other than my neuro, yet my neuro was notified by my med company that I had ceased the med.) So I don't think you'll be able to hide the fact that you're not taking the DMD from the neuro.

[onlyairfare]

One way to approach this is to see a different doctor for your CDL than the one(s) you see for your ongoing medical care. Your CDL certificate, and often the detailed application itself with all your personal medical information on it, will be inspected by your employer.

Certainly no doctor can force you to take medication, and as pointed out, you could say you are taking it if that is what makes the doctor happy, even if you are not actually taking it.

If you are physically fit enough to pass the CDL exam and do the job, it doesn't seem right that the doctor holds you hostage.

[jcrain9663]

I would not continue with a doctor who is basically using blackmail against me. Which is exactly what it is. It should be Your choice to take dmds or not.

My neuron lost Interest when I refused to take gilenya because there are no studies yet on effectiveness for PPMS.

[ibkensayers]

Reply

I appreciate everyone's comments. Several asked about the results from the MRI's. Well the doctor never really went over the results or told me if my vision problems were caused by MS or not.

My family has been struggling financially because I was out of work last September. When I was placed out of service by my company and was forced by the Neuro to have 4 MRI's I went into a major panic attack. I have an incredible fear of being out of work and my company wasn't about to put up with me being gone for very long.

I spent several days in massive depression when I was out of work. I felt blackmailed into owing all sorts of medical bills I felt were unnecessary and I thought I wouldn't be able to return to work. This also filled me with such rage and violent thoughts that I believe I was becoming somewhat psychotic. I don't think I would ever act on such thoughts, but I was having a horrible time calming down.

After the MRI and EEG I was afraid of speaking or asking the doctor any questions. I know my tendency to get a bit belligerant when I agree with somebody and I was worried if I offended the doctor in any way he wouldn't allow me to go back to work. Therefore, my only concern at my last appointment was getting to go back to work.

Looking back I feel foolish that I didn't ask him about the MRI's. The records from 2003 are unavailable which means there is nothing to compare the new MRI's to anyway.

As of now, I am planning on canceling my future appoint with the doctor and trying to find a new one. One thing I am convinced of through the whole thing is that I definately do need another doctor.

[Bob698]

I don't understand why you want another Doc.
It sounds like they're doing their job and taking your CDL status seriously.

Try putting it in common terms- someone wants the Doc to deliver a hazerdous load by taking an unsafe shortcut that will save a couple of hours. Is it worth it for them to ignore all their training and experience?

[WendyRochet]

I'm so with Bob on this!

This is why its important to understand what MS really is.
Don't focus on the flare stuff, focus on what's happening to your nervous system. That's tough to do because we can't feel that kind of damage BUT its what's causing all the other problems.
Untreated, damage tends to be on-going.
The DMDs can be a pain but its pretty insignificant compared to what else could be happening.

this is your health, this is your quality of life these meds have been around for sometime now,

Why oh why would you even question not taking medicine for this neurological damaging disease is beyond me?

I've had loved ones die with diseases around me trying to be nutritional and "alternative"

MS damage can happen in your body and you don't even know it!

I'm on Rebif its taking me approximately 4-6 mths to get used to the flu-like symptoms.the time of day I found can really make a difference in how you feel later. Your body has to have time to adjust to these meds. Everyone is different thank God we have choices!

My last MRI was good, my DR dealt with MS for a long time, im realizing he's a good Dr. I have a hard time trusting Drs.

One of my beginning symptoms was optic neuritis that was enough to scare the he'll out of me, I'm certainly not going to gamble with my vision

These meds are helping people why gamble without them?

[WendyRochet]

Your financial situation will worsen

I appreciate everyone's comments. Several asked about the results from the MRI's. Well the doctor never really went over the results or told me if my vision problems were caused by MS or not.

My family has been struggling financially because I was out of work last September. When I was placed out of service by my company and was forced by the Neuro to have 4 MRI's I went into a major panic attack. I have an incredible fear of being out of work and my company wasn't about to put up with me being gone for very long.

I spent several days in massive depression when I was out of work. I felt blackmailed into owing all sorts of medical bills I felt were unnecessary and I thought I wouldn't be able to return to work. This also filled me with such rage and violent thoughts that I believe I was becoming somewhat psychotic. I don't think I would ever act on such thoughts, but I was having a horrible time calming down.

After the MRI and EEG I was afraid of speaking or asking the
doctor any questions. I know my tendency to get a bit belligerant when I agree with somebody and I was worried if I offended the doctor in any way he wouldn't allow me to go back to work. Therefore, my only concern at my last appointment was getting to go back to work.

Looking back I feel foolish that I didn't ask him about the MRI's. The records from 2003 are unavailable which means there is nothing to compare the new MRI's to anyway.

As of now, I am planning on canceling my future appoint with the doctor and trying to find a new one. One thing I am convinced of through the whole thing is that I definately do need another doctor.

I'm so sorry your going through this, I hate MS

but if you don't go on the medicine chance is you eventually will not be able to work anyway

Just talk to the folks back in the day who had no medicine to go on, this disease can be so debilitating, I'm worried for you risking your life

You may want to consider a change in job, lots of people around here, older guys were forced when a paper mill shut down here to seek out other training at the college for different jobs.

Sometimes wether we like it or not we are forced to change and sometimes it is better.

I'm on Rebif I'm 5'2" 114 lbs it's hard for me to inject my little body, my dr told me not to inject in my arms because they were too small. I barely had any fat to inject into! It sucks but I'm getting used to it. I still dont like it but I know it's helping.

I didn't have insurance at the time and I qualified for Rebif, they didn't charge me a dime to get my injections, now I have insurance and I'm still on their assistance program only 50 a month instead of 200

I think it's a deal since my last MRI was good!

Good luck I hope you are able to make the best decision for yourself, I just strongly feel that this disease is not something you want to mess around with, the damage once it's done is ir-reversible and it can happen without you even feeling that it's happening to you