Last reply 1 year ago
Damned if I do and Damned if I dont..

Please leave opinion. I diagnosed was 1996 {26 yrs old} after birth of 1st child…all sensory symptoms.. pregnant 14 weeks post partum gave birth ..5 weeks after vertigo set in real bad went in hospital for steroids don’t think it helped sensory symptoms started up all last 2-3 months never went on any meds fought with my Dr all the time went for yearly mri and by 2002 he finally didn’t argue with me anymore. He said my lesions were disappearing and my way was working…I stopped going after that..had 2 more babies in years to follow without a marked relapse….in between I had optic neuritis I thought it was my sinuses short lived still didn’t think about my ms and continued my healthy lifestyle. Vertigo is back with slight vision impairment due to vertigo…slight sensory sensations in left hand……. finally went to neurologist and tecfidera is being sold to me there is a part of me that doesn’t think I shouldn’t go on anything I am now 47 and scared not too incase I get worse but case history tells me a different story…I’m scared of the drugs and If I took the all tose years ago they would have said I did so well because of the drugs…….I feel damned if I do and damned if I don’t……..

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stumbler
1 year ago

@stacy4boys , we have MS, so we’re all damned if we do and damned if we don’t, to some extent.

Adopting a Disease Modifying Treatment (DMT) is a form of insurance for the future. We all hope we don’t need it, but it’s comforting to have it, just in case we do need it.

We just don’t want to find ourselves in a situation, years down the line, where we regret not starting the DMT…………


islandgal
1 year ago

Hello stumbler may i ask you…or anyone else, im too scared of side affects and the gamble of it being pointless and not working..dmds i mean.
Anyone having good results long term on it?
I have declined even more but fear feeling way worse going on the meds route. I could do with a bit of feedback .diet has a huge part to play of which iv made the changes but the stats on these drugs , big money makers we mustnt forget,arent hugely high either.hmmm what to do! Read few books which are so apposed to them .


stumbler
1 year ago

@islandgal , rather than dwell on the argument to start DMTs or not, consider the following question:-

What scares you most

– the side effects of DMTs; or
– your MS progressing to render you wheelchair-bound or bed-bound?

There are some arguments about DMTs from our respected medical professionals at Barts here :-

http://multiple-sclerosis-research.blogspot.com/search?q=start+dmts+or+not that may be worth reading


mousy
1 year ago

I’ve been taking Tecfidera for 15 months now. My latest scan showed no change. The side effects are minimal and easy to live with….becoming permanently disabled by an relapse would be less so.

To be honest I think anyone who puts their head in the sand and believes diet and ignoring the fact they have a progressive neurological disease is crazy.

Sorry not to sugar coat it but if your Doctor is offering you a drug that can help prevent a relapse why wouldnt you take it?


tracyd
1 year ago

@stacy4boys
I was diagnosed at 43, and am now 45. Tecfidera was offered to me too. I had already decided that I wanted Lemtada rather than Tec, less intrusive to my life, less scary side effects and potentially a much better outcome.
I’m now 1 year post completion of the 2 rounds of treatment and life for me is normal again, my symptoms have gone and I don’t regret my choice for a moment.
A DMT is an insurance policy for your future, please don’t wait ‘until it’s bad enough’ because MS might have taken something from you that you can’t get back by that point.

You have a friend request, if you would like to talk I’m happy to share contact details xxx


stacy4boys
1 year ago

Thank you all of you I appreciate all your thoughts …….


rwiebe62
1 year ago

I have been on Tecfidera since since May of 2015. My MS symptoms started in December 2014. Had a relapse every month until I got on my meds. Haven’t had a relapse since September 2015. Is it the meds? Who knows really, I also adopted a paleo type diet very soon after I was diagnosed (though I am getting looser with it now) and try to get physical exercise every day. I actually think that diet and exercise play a huge part in MS symptoms, as feeling as good as you can gives you a positive mind and more energy. I also think my meds have been helping. I am on meds for peace of mind. I want to know I am doing everything I possibly can to prevent a relapse, and if one happens, then I have to accept that. I don’t want to look back and think ‘what if.’

That being said, I know people who are not on meds as they don’t believe in them. Therefore, they don’t need medication for peace of mind. Your mental state plays a huge part in the daily battle with MS, I would suggest doing what you have to to give yourself peace of mind.

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