New and a little overwhelmed

[bethie2739]

I was diagnosed about a month ago. My Dr. and I have decided to wait on DMT. I don't know if this is my best choice. I go back in April to discuss it further. Any thoughts?

Beth

[carolek572 CommunityAmbassador]

Welcome to this forum, bethie2739 There is a wealth of information on this forum! While, this is helpful, this forum does not replace having a dedicated medical team. Listen to your doctors, and get as much information as you can so that you can make the best decision regarding your 'ms' treatment(s). Looking forward to 'hearing' more about you, and again, welcome!

[Royjr]

Hello Beth and welcome. I’m not a doctor but everything I’ve heard and read it was recommended to start a DMT as soon as possible. I would never tell you that your doctor is wrong, I’m just telling you what I was instructed. There’s people here that aren’t on any DMT and maybe they can answer you better than me. I wish you the best and good luck on whatever you decide.

Royjr

[greaterexp]

Welcome! We obviously can't know your particular situation, but I think the general wisdom is to start a DMT as soon as possible. There is no cure, but DMTs can slow progression and help prevent relapses which can leave residual issues. I guess I want to do whatever I can to stay as healthy and mobile for as long as possible.

Do your research and bring your thoughts to your doctor soon. But we are here for support whenever you need us. We all understand what we go through in understanding and adapting to this disease. You aren't alone.

mymsaa.org/

[jimeka]

Hi Bethie, you haven’t said what type of ms you have or how old you are. There are lots of people on Ocrevus, the latest DMT. Research that one and see what your doctor or ms neurologist has to say. Blessings Jimeka 🦋

[bxrmom]

Welcome to this wonderful group bethie2739 Do you know why your neuro recommended not starting anything yet? When I was dx back in 2006 my neuro sent me home with info on the different treatments available at the time so that I could make a choice and let him know what I chose in 2 weeks. It was recommended to start something right away to keep relapses away. Look forward to getting to know you.

Jessie

[Jesmcd2 CommunityAmbassador]

Hi bethie2739 I can imagine how overwhelmed you are.🤗 And it's ok. Just breathe. 😊 I'm sure you were given a ton of "stuff" to read, and it can boggle the already confused mind.🙄

Hang in there my new friend! It's a rollercoaster ride! With or without a DMT. And that choice is always between you and your Neuro. Which I hope your seeing? An MS Neuro? 😊

Please, jump in anywhere, ask anything, cry, yell, laugh, we are here! 🤗💕

Jes🌌

[Madeleinemom]

Welcome! I do remember that day well - the d/x. At once relieved, yet … deer caught in headlights would have been an apt description

Please work with your medical team, but - IMHO - the sooner a DMT is started, the better off you can expect to be.

[JTZES]

Your doctor did the correct choose. You need to do your own research on your best option. If you don't like shots Techfederia but my be a good option and there are others that do a great job but we're all different so you may need to try a couple to see what works best for you.

Jeff

[Peruzzot]

Do your research and write down your questions. That way you can take your list with you to the next appointment so that you don't forget to ask something. Write down the answers to those questions as quickly as possible to help remember what you were told. Research all the MS meds and figure out which ones are definitely not for you. There is one, I forget off the top of my head which one it was, but it increases your chances of developing leukemia. I have a family history of leukemia so that one was an immediate not for me choice. Another was eliminated from the list when it was found that I am also iron deficiency anemic and that particular med could make me go blind because of it. Do your research. Also ask what kind of side effects are and are not expected with each medication as well.

[nicoly3467]

Hi Bethie2739,

Welcome to our support group! This is a supportive forum with kind, caring people.

Being newly diagnosed with MS is very difficult and takes a while to process having the disease, in addition to any new symptoms you may be dealing with now. I think I’m still processing it after 5+ years; however what everyone else posted here is right. Follow your doctor’s advice. DMT is usually advised by neurologists, but some patients have done well with alternative therapies only- depending if their MS

is mild with limited symptoms and/or not getting frequent relapses or any at all.

There are about 15 MS treatments right now. 3 are oral medicines (Tecfidera, Gilenya, Aubagio), daily injectable medicines: (Copaxone, Rebif, etc) or IV infusion treatments (Ocrevus, Tysabri, etc). Depending on the stage of your Ms, this plays a key factor for you and your doc deciding if and about a DMT in the future.

I’ve been on all types of treatments in the past and it’s ‘trial and error’ until you find a few good ones in that work better. I’m currently on Tecfidera (daily oral medicine since Dec). Doing your research will help you understand how the medicine works in the body and your doc can tell you that too. As most have said, all Tx’s help delay progression of disease as best it can and helps keep relapses at bay.

We are here for you any time. Just reach out and ask for help.

Nikki 😊

[mrsmike9]

Do not pass "go", do not collect $200. Why on earth did he say to wait??? Everything I've read says to start ASAP. That may be a good question for the neuro. When you do start just know it may take several tries to get one that works for you. My 3rd was the trick. So don't give up. Write down questions and don't be afraid to ask them. You must advocate for yourself!

[Hidden]

The patient education I’ve received since dx (2013) say DMT the sooner the better. Studies have even shown to start at the beginning- such as CIS. Second opinion? May not even be charged but worth it if they do-MS specialist. Mine asked when I first met her, why I wasn’t switched sooner because I was progressing! I lost valuable time! IMO!

[Bodega1939 in reply to Hidden]

Maybe not WRTO "lost time". The history of DMTs is not as wholesome as some would think or hope. Pub Med is a good source simply because they have many authorities who do very fine research from many countries and many (maybe most) are not MDs. [MDs simply cannot do the type of research PhDs do because of time restraints...and MDs are trained differently from PhDs who tend to have tight research interests. Working together they do extraordinarily well.

[Bodega1939]

Because I am a sceptic, a voracious reader, logical and medically trained I made the decision early on to not take any pharmaceutical drug without knowing all, literally all, of the published side effects and how that particular drug really worked for people with MS. With the plethora of new drugs on the market, the decision to take a drug advocated by a doc (with who knows what benefit they get from their own advocacy and/or intentions) becomes problematic. It will be up to you to understand the vocabulary, ask questions of knowledgeable people, and of other people with problems such as you have or similar to what you have. Then you must assess if the benefits or problems would be tolerated by you.

At the same time, I began my quest to see if there were any organic based products that would help with the symptoms. I quit eating anything that had synthetic products added...what a continuing problem that has been! And I went into "pure" products like whole milk, butter instead of 'butter like' or 'similar to'. I am a voracious label reader!

I think it very important to NOT GIVE UP. Keep as active as you can be, love the earth and sky and our universe, love the people who work with you...you know, do all the Buddhist, Christian, Jewish good "stuff"...it is a very dangerous place we get to personally and socially when we hate. And very importantly stay away from people who denigrate, demean or otherwise diminish you and who never offer to help you. You have probably helped others all your life. Let it be someone else's turn for awhile.

I would be happy to respond to your question if I can actually answer them. Nemaste.

[jackiesj]

How are you doing now?

[Hidden]

Good morning. I will throw my "two cents" in here.

I have newly been diagnosed with ms, by my Pcp, on January after my first MRI. I went to him in early December after having to quit my job and getting Medicaid thru the state. My feet have been numb for a year and I just worked with it (not having medical insurance with my employer).

I have had whole body numbness now for almost 4 months now...and very weak. My hands, I think is the worst! I live alone and can barely function.

My pcp, did refer me to a Neurologist and am awaiting this appointment on March 10.

I asked my pcp about steroid treatment while I wait for my appointment and he said no (as did the Neurologist, when I phoned him).

I personally would not and will not turn down any treatment.

I wish you all the best.

I have learned alot by reading about others and different treatment options out there, but like I have read many times... MS, is called a "snowflake disease"......nobody is the same.