Last reply 2 months ago
Newly Dignosed. Advice please ?

Hi
I’ve just been newly diagnosed with RRMS and had my first appointment with my Ms nurse who is advising me to go onto Avonex. I’ve been told diet has no effect on Ms eventhough i have cut out gluten, sugar and diary and feel some what better and there are no serious side effects from medication? Just wanted to hear some other stories about early diagnosis and choices people have made x

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


stacey
3 months ago

@zara hi I’m Stacey, I got diagnosed 11 years ago when I was 18 after a very bad relapse, I first went on tysabri for 7 years but was tested positive for JCV virus. So iv now been on Conpaxone for 3 years, I inject 3 times a week but just had a relapse 3 weeks ago.


edmontonalberta
3 months ago

@zara

Who told you diet has no effect on MS? Whomever told you that is either incompetent or lying to you…

What we put into our body affects everything to do with our health. A diet of soft drinks & other junk food will affect people different than fruits / vegetables / non-processed meat…

If you want specific suggestions just ask. Everyone’s body is different; yet if you ask 20 people for suggestions, almost all 20 will have recommendations in common. Most will have slight variations depending upon what works for them…

Since you asked… 😉


mlgilber1
3 months ago

Diet has a huge effect on MS so I have no idea why they’d say that. All DMTs have side effects that should be taken into consideration so I’d research the medications to make sure you’re comfortable with it. I’m on Ocrevus so I don’t know anything about Avonex. Good luck!


stumbler
3 months ago

Hi @zara and welcome.

The medical profession don’t subscribe to diet playing a part in managing MS. This is down to the absence of clinical evidence, although there is a fair amount of anecdotal evidence that abounds.

One thing for sure is that a healthier diet will make you feel generally better.

I see that your MS Nurse is advising a first line Disease Modifying Therapy (DMT). This seems to fly in the face of present day thinking, to hit MS hard and fast with the most effective treatments. There is little point in accumulating MS damage as you slowly work your way through the available DMTs.

You should do your own research so that you can be an active participant in any related discussions. The following will help :-

https://support.mstrust.org.uk/file/DMD-Book-Final-WEB.pdf


zara
3 months ago

@stacey
@edmontonalberta
@mlgilber1
@stumbler

Thank you all for your replies
I will definitely research about my options and keep up my healthy eating.

Has anyone been in a position where they thought about not taking any DMT?


smack
3 months ago

The numerologist wants you on a DMD. This is the current theory wit MS. My sister used a Avonex for awhile. Painful shot . Slept all weekend after. Ask nurse about an oral med. Screw the shots. All the drugs except Ocrevus target the same stuff. Ask Nuero not nurse. Trust me I have been dealing with MS since 1978.


stumbler
3 months ago

@zara , it is a personal choice whether to adopt a DMT or not. If you decide not to, it’s always a decision that you can review at any time.


grandma
3 months ago

Hi @zara I was on Avonex for 23 years, was on the original trial when it was the first and only DMT available, got changed to Tecfidera 18 mths ago when things started to go downbank. They told me that rrms would become spms in ten to fifteen years, it took twenty three so not complaining. So DMT ‘s have given me an extra 8 years as far as I’m concerned. DMT’s do not cure ms but they delay progression, and there have been huge changes in the last few years, and if one DMT doesn’t work or doesn’t suit, you can always change, but I must say after all those years of sticking a needle in myself taking a tablet twice a day is a joy!🥊😜


cameron
2 months ago

I totally agree with @stumbler. First-line therapies have fallen out of favour with specialist neuro teams and for good reason. They used to be the only meds available – now there are better alternatives. Re: the diet – it’s crucial that you are as healthy as you can be for the sake of the MS. A healthy diet, weight control, stress reduction, adequate sleep (etc) are key to this. There’s no consensus about the effect on MS of gluten, dairy etc. but it is definitely accepted that adding further medical conditions to MS is really bad news. How we get to an improved healthy state is (IMO) an entirely individual choice. I guess it’s finding the balance between adopting healthier ways of living and maintaining our pre-MS lifestyle as far as possible. My own experience tells me that small changes are the easiest to make and maintain. xx

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.