5 years ago
am i crazy?

after much thought i have decided not to take any DMD’s (was diagnosed in oct 2011). from what i have read there are alot of side affects and no guarantee which one if any will work for u. i am ok now if i deterioate my decision may change. but what are everyones thoughts on treatment?…

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drs wanted to start me on copaxone..any help will be appreciated. much thanx 🙂

I decided not to take any DMDs because I haven’t had any true relapses since my first symptoms appeared. Also, I was really wary of the side effects – it just didn’t seem worth it to me personally. My family think I’m crazy no matter how many times I tell them my decision and reasons and that it’s NOT A CURE!!

your last statement is what does it for me too! i agree, its not a cure! my family thankfully are supporting me with my decision (so far). i am a diabetic on 5 injections a day, another would just push me over the edge. are u taking any alternative meds? like anything herbal etc and have you adjusted anything else? glad to see im not the only crazy one..:)

Hey, its your decision, peronally I was always up for taking DMDs, but then my MS had been reidiculously actibe when I was diagnosed and if you’re taking 5 injections already, the last thing I’d want to be doing would be adding to that total. I’d feel, at this point after your diagnosis, its all a bit too much, too soon, to be making any firm choices on your treatment. The important thing to remember about any drug or treatment for MS is that it is just there to help prevent future disability, but everyone is different.

People will tell you to take this pill, or that vitamin to help your MS, some will, others won’t, but if your mind truly believes what you’re doing is going to help, it can have a much bigger effect than any number of pills. The mind is a very strange, very powerful tool, and if you truly believe that something will make you feel better, you will feel a little better.

Ditto Gav’s comment about it being entirely your decision at the end of the day. I’d just say to make sure you’ve done your research thoroughly enough so that you are making a truly informed decision.

I personally am up for DMDs or anything that can slow progression, despite the fact that my MS has been relatively mild and inactive (touch wood) since I was diagnosed. But as I wanted to do everything possible to keep it that way, I decided to go on DMDs. First I was on Rebif and the side effects, while annoying, were tolerable and manageable. They weren’t so bad that I considered ever stopping. Was on that for 3 years but now I’m currently in the process of moving to Copaxone. Although I’m annoyed I will now have to take daily injections, I can put up with it knowing I’m doing everything I can to slow the progression.

Having said that, everyone is different. My decision to take DMDs has alot to do with my personality. I would have kicked myself if I’d refused the DMDs on offer and then relapsed!

I was dx’d 7yrs ago n I was on avonex injection without any major relapses or symtoms..I hated taking meds n I often skipped..even went a few months without it..7yrs later a relapse hit me so hard I’m currently considered disable n cant work all in one year..I feel like crap daily..I wish I took my meds n health more seriously..just cuz u don’t see symptoms doesn’t mean ur brain is not creating lesions..u should consider it…good luck

What’s been said is correct, it isn’t a cure. What it does do though is help minimise future relapses.
I first had effects 3 years ago, it was a few weeks of optic neuritis and and a couple of months not being able to walk particularly well. Those symptoms pretty much subsided, only remaining was that I couldn’t run, no biggie. That was the case for the subsequent two years, after which I then relapsed, again I couldn’t walk for more than about 10mins at a time progressively struggling more the more I tried, over the subsequent 10 months I lost most of the feeling in my hands and had the optic neuritis again. These continuing issues and relapses postponed the treatment I was supposed to have (taking part in an trial for the newer version of Avonex) and I’ve now been put on Tysabri.
I can now walk normally again and even jog (for a bus but not a lot more, though I’m certainly not complaining!), and the feeling in and control of my hands has returned.
The optic neuritis is quite possibly permanent as is the affect it’s had on my colour vision and has meant I’ve had to quit my job as a designer.
I really wish I’d been on a DMD sooner. It may have help, it may not, I’ll never know. Though had I been on a DMD and it had still happened, I’d at least know I did what I could. I’m only 27 and want to give myself the greatest likelihood of staying as well as I am now.

I hope you don’t feel that I’m trying to scare or pressure you, I’m just telling you my experience to try to help you make your decision as informed as it can be. I’m sure there are people who’ve already made the decision you have and have been fine, there are always two sides though and it’s best to truly consider both. I also think it’s very true what Gav above said, your mental state can count for a lot.

As said before, it isn’t a cure; which means you still have it, with or without treatment, and whilst you can’t get rid of it, you can still do things to help minimise it’s future effects, whatever they may be.

Either way I wish you all the best with whatever you decide, after all, we all only get one shot a life and we have to make what we think is the best decision and only you know what’s right for you.

Kris

Thank u all so so much for your response.. U certainly have got the thought mechanism in my head going. I suppose it doesn’t help that once I was diagnosed that has been pretty much it! No support from consultants and nurse resources sparse! I have my first follow up appt next week and hope some questions may be answered then. Up until now it all what I have found out myself I have no idea of differences etc. To be quite Frank the nhs has been crap! I know it’s most definitely not a decision to be taken lightly. A new years resolution was to live for today and not thinkof the what ifs of tomo and up until now that is exactly what I am doing. I seriously genuinely thank u all so much for sharing your experiences and knowledge with me. Ill wait til seeing the neurologist before I set anything in stone. Much love to u all. 😉 x

Hi smile247 – unfortunately you’re not alone with your experience of the NHS. It really is a postcode lottery when it comes to how good or bad your care and support services are. Some people do really feel like they are just left on their own with no help whatsoever, while others (like me) are pointed in all the right directions and feel like the MS support services can’t do enough to help. I hope your experience of the NHS improves and good luck with your decision making!

Even if you’re not taking DMDs, I suggest you take vitamin D -d3- capsules and fish oil or flax-seed oil capsules, because I’ve been taking both and have found them very helpful. 🙂 Best of luck! x

Hey GMG and ambika thanx for your response. where about are u based And what kind if support have u had? And ambika how have those supplements and vitamins helped u? 🙂

Always dish this out every now and then http://djdsouza.wordpress.com/2009/01/12/what-i-do-to-fight-the-effects-of-multiple-sclerosis/

Most of it is from properly researched trials.

The turmeric (haldi) thing needs to be tried to see if it helps you.
(see http://www.newscientist.com/article/mg21328475.400-ms-damage-washed-away-by-stream-of-young-blood.html)

I’ve had help from my MS nurse, a local MS Therapy Centre (http://www.msntc.org.uk/), dietician, MS Socity and MS Trust, lots of researchers who I’ve been in contact with for one reason or another. Even if the NHS seems to leave you to your own devices, the charity organisations such as MS Society have plenty of help available including a helpline you can call to ask any questions that you need to. Lack of Vit D has been shown to play a part in triggering MS, so taking supplements (advisable to get your Vit D level tested first just so you get a base line – your GP can do this) is a good course. It’s also important to get your Omega 3s and 6s….

Hi,i took avonex for a couple of months and it really messed me up,it took nearly a year to recover!i just take an asprin a day and feel like new now,best of luck whatever you choose…

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