Last reply 1 month ago
New to MS

Hi everyone,
So two days ago I was diagnosed with MS.
I have an appointment next week with my neurologist again and I’m guessing I will be discussing what treatment to go on.
Do you have any recommendations of what is working well for people or any advice for me please as this is all still new to me, although my neurologist says I have more than likely been living with this for over ten years.
Thanks in advance
Becky 😊

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studentandms
1 month ago

Hi Becky, welcome to shift.ms and great to see you’ve found your way here after diagnosis.

The MS Trust have a treatment finder page which is really helpful. Here is the link https://www.mstrust.org.uk/about-ms/ms-treatments/treatment-finder
You might not be eligible for all of the treatments but good to look at and have thought through before seeing the neuro. They also have a lot of general MS info and you can find lots of conversations around treatment here on shift.ms by typing it into the search bar.

Take someone with you if you can so they can take notes. Ask as many questions as come to your mind so that you leave feeling like you have as much information as you need 😊

Hope it goes well!
Sasha


beckyann
1 month ago

Thanks Sasha,
I will have a look at that and certainly take somebody with me next week to take notes.
Many Thanks
Becky


brando
1 month ago

Welcome to the forum, if you ever need to just vent post away.

just keep in mind mot all treatments work for everyone as well when I was first diagnosed, I was on beta feron and this was not the right treatment for me I had symptoms come back 6 weeks after beginning treatment. Tysabri worked well for me and I have been symptom free since.

you made it through the first day and that’s usually the worst day for most.

all the best.

Brando.


stumbler
1 month ago

Hi @beckyann and welcome.

You’ve asked a very broad question and so much depends on you and your preferences, lifestyle and the risk, which you find acceptable.

Your Neuro should give you some guidance, but they can fall into one of two schools of thought. The conservative Neuro, who would like you to start on the least effective treatments, stepping up as you accrue MS damage. And, the proactive Neuro who follows the “hit it hard, hit it fast”, with the most effective treatments, view.

So, if they do suggest a treatment for you, you should ask why they’ve selected that one, opposed to others. So, your research is essential, so that you can partake in an active discussion.


beckyann
1 month ago

Thankyou for your replies and advice people. I guess my neurologist will narrow the treatments down to suit me 😊


melissa-g
1 month ago

Hi @beckyann
Glad you found us here at Shift.ms 🙂 I’m sure you will soon see the welcome message I sent you.
My advice would be to write down any questions that come to you before you go, so you’re sure you cover all of them at your appointment. I agree bringing someone with you is important too!
My motto has become “one day at a time” and I try to remind myself of that often, it helps me to not feel overwhelmed, and tackle things as they come.


beckyann
1 month ago

@melissa-g Thanks for that, one day at a time sounds good as I am still a little overwhelmed at this minute and unsure what this means for my future but I am just carrying on and getting on with it 👍🏽


vixen
1 month ago

Hello @beckyann, welcome to this exclusive club of ours! It’s always a shame that there can’t be a ‘cool off holiday’ after a diagnosis, to let patients come to grips with a sudden diagnosis before having to suddenly think about DMDs. However, the other side is that the standard way is to advise newbies to hit it hard and fast. Try to avoid googling, it’s best to get your information from sites like this, MS Society or Barts Blog. And deffo don’t spend too much time thinking about the future at this stage, at the moment, it’s as said above. One day at a time. Once you start recovering and adapting to the diagnosis, you can start to think longer ahead. I would say it probably takes most people a year to fully absorb this diagnosis, so in that time it’s really important to take care of yourself, through diet, sleep and all things in moderation. You will be fine, lots of support here for you x


stumbler
1 month ago

@beckyann , you shouldn’t leave it all to the Neurologist’s decision. It’s your body, not theirs!


beckyann
1 month ago

Thankyou @vixen and @stumbler .. I am taking every day as it comes 👍🏽


smack
1 month ago

Welcome to the site. I was dx’ed in 1994 after years of symptoms. I did Copaxone for many years and did relatively well. The key now is to trust your doctor and your dx. Start researching everything about MS and options available. You have to be your own patient advocate. Just because you feel good don’t let down your guard. I wish I had more support back when I was dx’ed. I definitely would have done things differently. Continue to do everything while you can. It can only get worse and then you won’t be able to do these things. Don’t want to preach doom because everyone is different. Just my personal path has been rough. Good Luck!!


beckyann
1 month ago

@smack .. Thankyou for your reply, can I ask what things you would have done differently and also you say you was diagnosed in 1994 since then have there been any dramatic changes to your body?


smack
1 month ago

When I was dx’ed I thought a cure was around the corner. I stopped skiing, hiking and golf. Unfortunately things got worse and 25 years later I couldn’t do these things if I wanted. Worked for another 9 years and could get around and drive til last year. Keep moving!!


mamawals
1 month ago

Take your time in choosing a treatment. They all have potential side effects and potential benefits. They all work a little differently. In addition to effectiveness and side effects, I recommend you ask your neuro, and research, if a treatment you’re considering will impact your ability to have other treatments in the future, if there’s a rebound effect if you stop, and what kind of monitoring will be done while you’re on the treatment. Good luck!


mamawals
1 month ago

Oh, and since you’re a woman, if you want to have some, or more, kids in the future then also ask about safeness during pregnancy and impact on the child if the treatment is continued during pregnancy. Some treatments are considered more “tried and true” for safeness during pregnancy than others.


kim77
1 month ago

I started on Copaxone, but was getting site reactions. I moved to techfidera, but after 6 years it stopped working for me and I had a very painful relapse. I went on the wahls Protocol diet and felt amazing. My MRIs showed diminishing lesions. I was off meds and felt wonderful! Then Monday 4/15 hit! Another painful relapse. Had my first round of steroids today. Pain is better, but I am wide awake. Ughhhh. Aubagio is my next drug of choice. Hopefully I’m choosing the right one. It was that or Gylenia. With family history of heart problems and strokes, I thought I could not take Gylenia. Good luck with what you decide. It make take some time until you find the right one. I do suggest no gluten, dairy or sugar. These did make a big difference in my symptoms. Oh, and exercise! I walk 2 miles a day. It helps to keep my muscles from cramping. I’m here if you need anything!


rocky
1 month ago

Hey there! I can’t add to the opinions of treatment as I’ve only been diagnosed in the last month. Thought I’d touch base in case you want to talk to someone else just thrown in the deep end. Good luck!


beckyann
1 month ago

Thanks @mamawals , @kim77 & @rocky
😊

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