Last reply 4 months ago
Confused.com

Hi peeps
Where to start?! I’ve had two MRIs and I’ve got a lumbar puncture coming up in Jan. The Neuro suspects RRMS as there has been two incidents within 6 months. The 1st was my leg feeling odd and wooden, followed by a summer of walking around with drop foot. The 2nd was my right arm and hand suddenly went numb, uncoordinated and useless to the point I couldn’t cut up my own food etc for a few weeks. I could live with the dodgy leg, but as I’m a fairly active musician, the lack of dexterity and strength in my hand drove me mad!! That has at least improved, with a lot of daily rehab, so I can just about blag my way through a set on my sax.
After my first MRI, a friend suggested VitD. I supplemented with that and a few other things, and in my 2nd scan a month later, one of the lesions in my brain had reduced slightly.

The neuro has suggested looking at the DMTs, but reading up on them I feel a bit horrified. I’ve never really been one for popping pills and the thought of these intensely powerful drugs scare the life out of me. Apart from being clever things in the way they suppress the immune system, stopping the myelin getting attacked etc, my question I suppose is why the treatment doesn’t look to building the immune system up to work efficiently to produce the same result?! Has anyone successfully managed MS without the pharmaceutical powerhouses? I’m tempted to at least try for a bit asking for high dose VitD alongside managing stress, eating less cake and exercising. As the usual prescribed drugs don’t technically stop the progression of the disease, do the pros outweigh the cons in taking them? I’m scared of declining them as it probably goes against the medical grain, but I’d like to know if anyone has managed MS alternatively through supplements and lifestyle as my intuition is nagging at me.
As far as the pending diagnosis goes, I’ve at least made peace with it and am treating it with curiosity and kindness, at last listening to my body and mind…..probably the life lesson I needed to take stock!!

Thank you
Rach.🎷

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vixen
4 months ago

Hello rach_Is, welcome to Shift. Well, of course, you don’t need to really think about DMTs until a diagnosis is, or isn’t confirmed. However, there are lots that choose not to tread the DMT path, for personal and good reasons. Regardless of what you might decide, a focus on healthy diet and rest/exercise is a staple. As is avoiding stress.

I did decide to start a DMD when I was diagnosed two years ago. I guess as I’m older, I felt that I didn’t have too much time to waste and wanted to try to slow down progression, it’s working out OK by. Have full on respect for those who decide not to dabble. Untilmately, there is no way for me to ever know if I would have been better, or worse off for having taken them, but hey ho.

It sounds like you’re really on top of things and asking great questions. Good luck with this process and let us know how things unfold x


Anonymous
4 months ago

@Rach_Is I went through the exact same scenario just a few months ago and even wrote a blog on this scenario, I wasn’t going to take the Tecfidera medication at all, it got delivered to my house and stayed in a drawer for a few weeks, I hate taking drugs and I don’t like big phamacutical companies but in these scenarios we need as much help as we can get, imagine in time and something happens and you look back and think I wish I had of taken them they may would have prevented this you would be gutted, the trouble is with MS is the unknown, I could be taking my tablets and something happen to me but at least I could look back and say I done as much as I could to try to prevent this, another thing you need to think off if the doctors advise on drugs together with the nurse specialists and you don’t take them and you go in for help they probably won’t look at this with confidence in you, but at the end of the day it is down to you and only you. Hope you get this sorted any other probs give me a shout, Rob


jreberg74gmail
4 months ago

Hello @rach_ls, i was diagnosed with ms in 2007. The neurologist gave me info on the drugs and i went home and studied up. At that time, the side effects from the drugs seemed worse then the unknown of ms. So i declined them. I did keep reading up on what ms was and what new drugs were coming out. I also drastically improved my diet and the way i deal with stress. 2 neurologists later, he was still pushing drugs. I asked him if i were on drugs, would you consider the treatment successful at this point. After consideration, he said yes and was more open to taking about alternatives to drugs. I liked him. I am now on my 6th neurologist, and still not on drugs, they still make me uneasy. I know when i eat unhealthy, all sorts of things start happening. I have made peace with my decision and life will be what it will be. Oh, i should probably mention the numerous nerologist are due to their retirement or me moving. Good luck with either path you choose.


stumbler
4 months ago

Hi @rach_ls and welcome.

You seem quite level-headed and philosophical about what’s going on. Just be wary that a formal diagnosis can hit you like a steam train, whether it’s expected or not.

Yes, the DMTs available to us are just too reduce the frequency and severity of relapses. Although, some of the recently released DMTs do try and regenerate our immune systems without the MS.

But, they are all powerful treatments and it is your choice whether to adopt them or not, a decision which you can change at any time.

You might want to have a look at the following website :-

https://overcomingms.org/

It’s a lifestyle programme, but does appreciate that DMTs can also play a part. There’s a book that accompanies the programme, which is available free.


rach_ls
4 months ago

Wow you guys! Thank you so much for your replies.
After I’d seen the neuro a couple of weeks ago, I did utterly fall apart and signed myself from work for the week to get my head around everything-glad I did as it gave me time to rage about it and feel the furore of emotions that all went with it!!
I’m mostly positive about things but today I feel a bit gloomy and quiet, which I’m just going with as it won’t last forever. I’m currently sat on the beach with headphones on looking at a calm sea and stormy sky-perfect remedy!!
Thank you peeps again!! I’ll wait and see what happens in a couple of weeks….


dominics
4 months ago

Hello,

Regarding the side effects: unlike a headache or an infection where a complete resolution of the issue through the use of a drug is the expected outcome, it is quite different with MS. You need to view it through a very different lens.

Drugs serve to slow down the progress of the disease, they do not cure it. To assess the efficacy of a drug for MS you need to look at long term and not short term data. This means looking at how effective a drug is in terms of increasing the time between relapses and how great the severity of the relapse is.

The prevailing wisdom amongst the leading clinicians is to hit it as hard and as fast as possible. Akin to fighting: you don’t start with rough cuddling that leads to aggressive tickling, and so on. Instead, you go for the knockout blow as soon as possible.

Vit D is an adjunct, not a therapy. It is speculated that a Vit D deficit renders one more susceptible to MS, it shouldn’t be confused with a cure.

Tons of good people here. Ask all the questions you need as you’ll be hit with a ton of new and unfamiliar stuff. It’s all good though, life hasn’t ended, just changed.

Best,

Dom

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