Diagnosed today

[Tulip77]

I talked to my Neuro today and she confirmed that I have MS 😕 she is starting me on Copaxone as soon as insurance approves it.

Any advice or tips? I am really overwhelmed.

[jimeka]

Did you discuss starting on the Ocrevus infusion? Is there a reason why she choose copoxone ?i am sorry about your dx, but now at least you know and you can start getting a handle on it. Everyone is here for you if you want to vent, if you are scared, if you just want a laugh or a virtual hug, if you have any questions, someone will help. Blessings Jimeka 🤗

[agapepilgrim]

We all were, believe me. Read all the books you can on healthy eating, exercise, supplements, and join this happy And sad informative group. We all are on a rollercoaster, but surviving!

[Hidden]

Stay strong and positive.

I know those are just words.

Everyone here, on this site is great and encouraging.

Reach out.

Prayers for you dear. 🙏

[rjoneslaw]

sorry to hear ur dx.

u should ask ur dr about ocrevus it has had better results.

u can search the forum about it

we laugh , vent, ask questions, and everything else here jump right in

[Bebeau]

My neurologist told me that there are currently 41 different treatments for MS and not to be too downhearted- it is no longer the wheelchair sentence that it used to be and more people are living well with an ms diagnosis than ever before. Stay positive and strong!

[greaterexp]

I'm sorry about the diagnosis, but now you know what you are dealing with and can do much to maintain your physical and cognitive abilities. It can feel overwhelming at first, like drinking out of a fire hose, but take it in little bites. It's really important to remember that my MS is not your MS. Every case is very different, and treatments have come quite a long way.

You should be getting visit from Teva's nurse who will guide you through the easy injection process. Once you do it a few times, you'll hardly think about it. Just follow the instructions carefully, rotate sites, try using the heat and cold packs as directed. I use a little cortisone cream to the injection site to reduce any itching, but over time, the local reactions have decreased. I've been on it for about 3-1/2 years.

Try to write down any questions in preparation for doctor's visits, keep track of your symptoms, and be sure to ask questions until you feel get answers.

MSAA has many excellent resources, so don't be afraid to use them:

mymsaa.org/

Remember that we are here for you. I expect there are hundreds of years' worth of experience represented here with lots of lovely, helpful people. Come here to vent and ask any questions. We're with you.

[bxrmom]

Sorry to hear about your dx but now that you know, you begin to move forward. Copaxone was the first med I was on after my dx, which was in 2006. I was on the daily dose and then the 3 times a week dose until a couple of years ago when I switched to Tecfidera. I switched because I was having a hard time finding places to inject.

Did your Neuro give you a choice of meds to choose from or did they just pick one for you? My Neuro at the time gave me info on the meds that were available at the time (not nearly as many that are available today). Gave me a week to look over the info and come back with my decision. Copaxone sounded the best to me because it had the least side effects.

You have already received some great info. Keep us posted.

[RoyceNewton]

Welcome to the family officially, I might suggest stronger medicine not so weak. Ocrevus is the strongest.

[Tulip77]

Thank you all for your kind words and encouragement. I really appreciate it.

My dr did not talk to me about other medications. She said that she always starts with copaxone because it is an older medicine and has less side effects.

I am overwhelmed and don’t even know what questions to ask. I was not expecting a “diagnosis” is anything so fast. I’ve read hundreds of posts about people spending years trying to find answers. I am thankful that I now know, but am a little freaked out, if I am being totally honest.

I work full time and am a single mom to two teens. I am concerned about the future and being able to continue to do all the thing that I have to do.

My conversation with the dr was over the phone and they are going to call me to schedule an appt to come in person to address all my questions at that time, once I have absorbed the news.

[kdali]

Welcome to the club 🤗 Now you can be treated.

Give yourself some time to get settled. You can search older posts for things like: newly diagnosed, injections, Copaxone, bladder issues, etc. There are plenty of resources to learn more about this disease, but be aware that many groups and sites are full of loathesome trolls wanting to share their misery.

I started on Copaxone because I was also doing fertility treatments 🙃

Keep moving forward.

[IFwczs]

Sorry to hear about your diagnosis, but I am sure you are relieved that some symptoms have been explained.

I have read your response about your doctor's choice of Copaxone. I disagree about Copaxone having less side effects than Ocrevus. There are no side effects for Ocrevus. Is your doctor old school? Do you have RRMS?

I used to tell all the newcomers about Ann Boroch's book "Healing Multiple Sclerosis." I will just tell you to watch what you eat. There is such a thing as anti-inflammatory diet - no sugar, gluten, dairy, peanuts.

[Humbrd]

It's true, at least you know what has been going on with you. But even with that said that doesn't make it any better at the moment. You're still trying to accept that diagnosis. I was diagnosed a year-and-a-half and I'm still sometimes in disbelief. On my "good days, in my good moments" I forget that I have it. Which is a good thing. Read all you can about it and educate yourself. Ignore the articles at this time that are sad. There are so many uplifting stories out there about people who are living with this and enjoying life, in whatever their capacity is. It is normal to feel scared and anxious. I'm so thankful that I found this site because there is so much support and good information here.

[Humbrd]

My doctor discussed with me not putting me on certain medications because I tested JC virus positive. And there is a very small chance that if put on certain medications you can develop PML, a serious brain infection. Several MS medications warn of this. Even though there's only a small chance I decided not to take that chance. That's why I started on Aubagio because it doesn't have that risk. There are a lot of people out there who are JC virus positive. It's something you should be tested for and think about.

[Lady_Winifred in reply to Humbrd]

Copaxone is not one with that concern either. 😊

[Humbrd in reply to Lady_Winifred]

That's good to hear.

[152114randal]

My wife At age 58 started copaxone 20 years ago and never left until last year when the insurance company switched her to the generic. She still walks on her own and is able to do most things. She does have minor balance problems and some muscle pain. We are fortunate here in NJ that she is able to go to physical therapy that is one hundred percent dedicated to MS patients. Good luck Tulip.

[sMilEs_N_bLuE_sKiEs]

Welcome!

It’s kind of bitter sweet... not wanting MS is that bitterness that “sucks” and the sweet is this forum, it’s an amazing forum!

Lots of cool people!

I was diagnosed last year, first neurologist diagnosed me and after all the test I had a sit down with her.. my third question out of a list of 15 was, how bad is it?

Her response, you can go down hill at any moment... 😢

Didn’t feel to comfortable asking any more... Felt abolished, destroyed, broken...

Yeaaaaaaa, she wasn’t very helpful at that point. (Great doctor, horrible bed side manners)

She wanted to put me on Tecfidera, small dosage. Good medication, I felt in my gut Though, it wasn’t gonna be enough...

IF, my diagnosis was so bad, why wasn’t I getting a better medication?!? 🤔

Like Being sent to a specialist?!?

Sooooo I went to my primary, between him and my wife; I got a referral to USC.

I eventually got That second Opinion.

Got a MS neurologist, not just a neurologist. Very important, something to research and see if your insurance will cover. Not many general neurologist are familiar With the different forms of MS and how to handle it.

It’s like a cook/chef. Some are good at making most meals but struggle when it comes to a specific dish. They might be able to pull it off and it’s satisfactory, but it’s missing something. That’s where the specialist steps in! They know exactly what’s missing! And Boom! 😉

I was placed on ocrevus, first dose was in January, waiting on my second dose.

My advice, breath. Take all information in stride. Ask lots of questions. Ask them twice if necessary. Read a good mix from others experiences with MS through this forum. Insight into what you might Or might not possibly go through.

Acceptance is important. You yourself have to accept it at some point, it’s a hard pill to swallow.

One thing that has worked for me, is picking people in my daily life that I feel comfortable with; I’ll tell them I have MS. I’m not talking about my family. Like my mechanic, a few buddies from the grocery store that I’ve gotten to know from all the times I go in. Old friends, new friends, and complete strangers! The more you talk about it, the easier it gets. If they are interested and ask, talk more. Most have allowed me to get it off my chest. I’ve had some pretty interesting conversations and learned just how many people are affected by MS. The individual who has it and the families who support and care for them...

not everyone will understand what you are going through.

This part is difficult, because it’s a non visual illness. You can’t see it.

MS sucks!

Needs to be said out loud, screamed out loud.

How you view it, your perception of it and how you decide to deal with it; is very important...

Ive accepted it a while ago... whatever happens, happens!

I can only control what’s in my power.

I’ve learned to smile more, and as much as possible. I’ve always been a happy go lucky dude. I’ve learned to be even more, why?!?!

Because I’m thankful for the opportunity to breath just one more day!

There are so many beautiful things in this world to enjoy, focusing on MS is counterproductive for me. 😉

Here for you friend!

Have a good day!

Hope I didn’t write to much... 😅

[Humbrd in reply to sMilEs_N_bLuE_sKiEs]

Very well said.

[Tulip77 in reply to sMilEs_N_bLuE_sKiEs]

Thank you for everything you said here. I’m almost about to cry (good cry, not ugly cry). I feel so blessed to have found this group!!!

My dr is a MS specialist. I feel pretty good with her. I can tell that I will be dealing more with her PA who is also very nice and extremely knowledgeable.

[sMilEs_N_bLuE_sKiEs in reply to Tulip77]

No prob!

Glad she’s a specialist. 👌😊

[Lady_Winifred]

Take a deep breath and try to calm down. Educate yourself and talk to others. I used Copaxone for 8 years. It has been my favorite so far. No side effects, no bloodwork or any other test to monitor my liver or kidneys or anything. Doing the shots is scary at first but they have an autoject that makes it easier. I'd suggest having your nurse go over the needle depth on the autoject and have her help you decide the depth. If it is in the right depth you will rarely even feel it. Hang in there.

[Tulip77]

You guys are awesome!!

[jodigirl750]

As scary as MS sounds, it's comforting to know it's not a death sentence. There are parts that will suck as you navigate figuring out your new mind and body, Some great days. Some bad days. And none of them can be planned! We do the best we can to navigate. Have a great support network like this one to explore. And one at home. Every day can be different. Those that love you will understand. You're not alone. You got this!

[Tazmanian]

I st!red on copaxone,I am now on ocrevus but

I used several medications between them. My health insurance required at least 3 meds before ocrevus. Check out nmss.com

[mrsmike9]

Try to relax. This can be lived with and not everyone does poorly with MS. Allow yourself some time to grieve. Don't beat yourself up if you need time to cry but try not to stay in that spot too long.

When I was first diagnosed I was put on Techfidera which I had a bad reaction to. Then Copaxone, which I also reacted badly to. Since then I have been on Aubagio. My point is what is good for one person may not be the greatest for another. Some people will say, oh xxx medicine is the best! Well, it's done well for them but possibly not you and don't be depressed if you have to change to different meds because something wasn't correct for you. I'm doing well on Aubagio and I love it as it is a once/day pill. Some people here reacted badly to it. So it's a very individual thing.

Write down questions as you think of them. I have a note taking app on my phone that I like the best. There are different ways of doing that, but nothing is worse than leaving the office and thinking, oh darn, I forgot to ask xxxx.

Many people here will tell you that by having MS they have found an inner strength they wouldn't have known they have. Me as well. Deep breathe. You can do this.

[DIsneyQueen]

Hi Tulip77, welcome, but I too am sorry you had to join our group. My suggestion would be if your neuro does not specialize in MS, find one who does. The general neurologist who diagnosed me referred me to one who specializes in MS. He told me he had done all he could for me and wanted me to be treated by someone who only dealt with MS. The new neurologist switched me to Ocrevus as soon as it was available and keeps me up to date on the most current research and treatments. Also, don’t be surprised if your family and friends have a hard time with your diagnosis. Not sure what your symptoms are but sure you are still very capable. Be as active as you can. Don’t let them think or act like you are not able to do what you are capable of. Be smart and listen to your body. With MS you will find it really does talk to you, and will scream if you don’t listen. Lots of great listeners and encouragement on this ate, come here often

[Tulip77]

I work for family which is good, but it means I am held to a high standard. I have some leadership roles as well. My job is not physical but it is mentally taxing. Concentration is hard and I am TIRED!

I’ve been so tired for months! I assume this is why. I mean I have had this exhaustion since before the new year. At the same time, I’ve been dieting and have lost 50 pounds since Christmas. People keep asking me if I feel better with the weight loss and I’m like.. I’m no, not really.

Will this medicine help with the fatigue. If not, what does help with it? I get plenty of sleep.