Recently diagnosed

[BobbIsMine]

I was diagnosed with MS at the end of August. I care for my uncle who also has MS. He is in rough shape because he did not take care of himself over the years, no meds, no neurologist. My boyfriend, who is the most supportive person I have ever met, isn’t really supportive of my fears involving the MS. Although my family is riddled with MS, I am feeling very alone with my fears. I know no one can tell me what to expect because every case is different. And I look at my uncle and can’t help but feel I am looking at my future. I am struggling with the “what ifs” and “when will this happen “ or “will this even happen “. I’m just looking for knowledge, support and friends I guess.

[AquaZumbaFan]

Welcome to the forum BobbIsMine! This a club that nobody wants to be in but you will find yourself surrounded by a very kind and supportive group of people. Some are newbies such as yourself but many are seasoned veterans who can all be a wealth of knowledge.. try to listen to your body and rest when you need to.. breathe and get a good neurologist.. I’ve got MS in my family as well so I know at least a little bit of anxiety that you’re having. Try to take one step at a time. I look forward to hearing more about your journey that brought you here.

[Gstrait in reply to AquaZumbaFan]

Hi I have been thinking about you lately. How are you doing? I have found a new Neurologist, and a Pain Dr. It has been way too hot this summer in TX. I'm having some dental issues now I go to a specialist on fri 6th. 1:45p.m.

[AquaZumbaFan in reply to Gstrait]

Hey Gstrait,

Good to hear from you. I’m really sorry to hear you’re having some dental issues. That is no fun at all. I’ve been fighting some weird , Elevation in calcium and blood pressure this summer… finally getting those things stabilized and then my primary tells me that my cholesterol has gone up… Lol feels like it’s always something but I’m gonna keep fighting it with diet and exercise. I was successful at getting it down before, but got a little lax with it as I was trying to put out other fires. we have had some really lovely days lately With much lower humidity and temperatures in the mid 70s.. they have really been welcome after the big heat this summer. Let me know how you’re doing after your dental work if you feel like it.🤗 ( ps. Any news on your journey to VA?)

[BobbIsMine in reply to AquaZumbaFan]

Rest is hard right now because I’m with my uncle all day, on call all night and the spasms in my back and legs keep me up at night. The good news is I will try Baclofen tonight for the first time and hopefully get some good sleep.

[AquaZumbaFan in reply to BobbIsMine]

I truly get what you’re saying.. I hope the baclofen helps you a lot. It helped me for years until they had to change it up. I worked in healthcare for many years and I remember I wasn’t able to take baclofen on the nights that I was on call for the hospital because I live 45 minutes away would have to drive. I would be so miserable on-call night..

[CV97]

The great news is that you live in a world where new discoveries are made everyday and the list of treatments is growing. The number of disease modifying treatments (DMTs) has increased substantially in the past 10 years.

Your uncle was likely diagnosed when there were only a few, "slightly better than nothing" treatment options available. This may be part of the reason he chose not to take medications or see a doctor for it.

While it is overwhelming to decide on the best course of action, we are so blessed to live in an age when options exist! His life with MS will not be your life with MS, as each of us have a very different journey with this disease.

[BobbIsMine in reply to CV97]

I do know 2 MS cases are not the same. My Grandma also had MS, she lived to be 93, and was in much better shape than my uncle. When his son was diagnosed, he found out there were new meds, we’ve got him going to a neurologist so hopefully he can get some new meds too. I am trying to stay positive, I just wish this didn’t occupy my every thought.

[CatsandCars in reply to BobbIsMine]

I think it would be a bit weird not to be freaked out at this stage. I still struggle with it, but it's not as bad as it used to be. I'm so sorry about your diagnosis, but in a twisted way, I kind of envy you. I wish I could have gotten some of these newer therapies when I first got diagnosed. And more will be on the way.

A good way to deal with the fear is to empower yourself. Get on a good, high efficacy DMT like Ocrevus or Kesimpta. Find a neurologist you feel comfortable with, and learn how to advocate for yourself. This site is a goldmine and I'm so glad you found us! Check out Aaron Boster's videos on YouTube to learn what you can do to manage your MS.

m.youtube.com/watch?v=ERrcc...(Not working as expected?)

Don't be put off by the setting. He will do videos anywhere.

Come back often, ask lots of questions, and hang out!

[BobbIsMine in reply to CatsandCars]

Thank you for the video! I will check him out for more!

[CatsandCars in reply to BobbIsMine]

You're welcome! I've learned so much from him. I wish I had discovered him years ago.

[CV97 in reply to BobbIsMine]

I think it's totally normal for it to occupy your every thought. I know it did for me when I was diagnosed. There's a lot of "what ifs" in life, and even more with MS. It's easy for those thoughts to creep in and make themselves at home in our heads. There's power in being able to take action against the disease. Hopefully seeing your family's experience with MS makes it easier for you to make the right decisions for yourself.

Hang in there, you've got this!

[Gstrait]

Hi welcome to the group I have been taking Kesimpta since Fri. I think it's working for me.Take it day by day. Take Care

[BobbIsMine in reply to Gstrait]

I start that soon as well.

[CatsandCars in reply to BobbIsMine]

That's good 😊

[Biggums]

Greetings BobbIsMine. Welcome. You shouldn't hold that fear. That causes unwarranted stress. Slow it down and take one day at a time. MS is a challenge on its own. You have good days and more challenging days. Everyday is a good day. Each day you can achieve something you didn't do yesterday.

[Peruzzot]

Welcome to the group. I can't think of anything to add to what everyone else has already mentioned. Other than, eat healthy, exercise as best you can, and if you smoke...quit.

[Greentime in reply to Peruzzot]

I second the exercise bit. It helps so much over the long term.

[Jer29-11]

Hi and welcome! I’m so sorry you’re having a hard time, completely understandable. Hang in there, you have a lot going on!

[JVWill]

Hi BobbyIsMine, welcome to the forum. I was diagnosed with RRMS and one thing I learned is get get on medication right away and get rid of any vices like smoking. Support groups helped me too. Get good rest and healthy diets.Take care.

[Essaad]

Hi ,you have to know that Ms is different from one person to another. You have to listen to your neurologist advice, there are many available treatments. You have to be positive and make sure you start physiotherapy ASAP. Eat healthy and avoid stress

[Misty2024]

Take heart. Listen to folks advice. We are a unique group. You will find support here. God be with you!

[Greentime]

When I was diagnosed decades ago, there wasn't much support. I did hear of a group that met, but I was too afraid to go for fear of what I would see. I imagined the worst. I think dealing with the initial fears after diagnosis is harder for you because you witness your uncle every day. This diagnosis changes your life, but let those changes be for the better. The positive changes you make will help you feel you have a little control and over time you will think less and less of the what ifs etc. I am sorry your boyfriend doesn't get the fears you have. Unless diagnosed with something scary, most people don't really get it. This group absolutely gets it, so you have come to the right place. 🤗

[Angelchef80]

Hey! I was diagnosed July 9, 2018. Welcome to our club, sorry you had to join. I can't tell you what can work for you because everyone's different. Also, it sounds like you have some first hand knowledge of this monster because of your uncle. I would just say find a neurologist that is a good fit for you (I'm on my 5th and so far I am so glad I found her). I also participate in an in person group that helps me a lot. Research is a helper for me but I would suggest not going down Google rabbit holes. Baclofen was/is a life saver with my spasticity so hopefully it gives you some relief. My DMT is Tysabri, but there are a good amount of options out there. Talk to doc and find the best option for you if that's the way you choose to go. I can say you will probably go through different emotions all the time. Emotions seems to ebb and flow and taking it one day at a time is the best way forward in my opinion. Just remember your uncles story is not yours, you are writing your own book.

[StacyHayward]

looks like you already understand the need for good drs and treatment. That’s a great start!!

Be your own best advocate. If a Dr isn’t a good fit, get a new one. Look for one who is proactive, not one who shrugs and says symptoms are normal for MS, so get use to it. Most symptoms can be treated to improve quality of life.

Same goes for meds. If one doesn’t work, or side effects are rough, ask to switch.

Get an exercise program. I wish that had been emphasized to me 20 years ago!!! I finally got serious 2 years ago and my improvement has been huge!

And don’t be afraid to rest. Trust me, your body will need it.

Best of luck!

[807lane]

Just popping in to say consider taking the DMT Tysabri. I have been on it for 15 years and have not had any new lesions in all that time and I have remained JC negative too. I wish every day that it had been my first DMT. I wasted 10 years on Avonex constantly having new lesions and the damage they cause. Everyone's journey is different but I wish someone had told to get on Tysabri asap! Best of luck to you.

[mrsmike9]

Take heart. I was diagnosed on 9/9/2014, almost 10 years to the day! My first two meds gave me bad reactions so for me "third times a charm" really worked! Speak up to your doctor if you feel things are not okay. Advocate for yourself. My early days first being diagnosed was similar to yours. Very nervous, full of questions, and feeling very alone in this journey. If I knew then where I'd be in ten years, I would have relaxed a lot more. Things are so different than from, really not even that long ago. Meds have come along that weren't available before and there is more understanding about MS. Try to not stress about it. Stress is the one thing that really knocks me over! Take one day at a time.

[Roamerwithroots]

I just want you to know that everyone IS different, and sometimes that works in your favor. I was diagnosed 11 years ago and I have not had a relapse since the optic neuritis I had that led to my diagnosis. I am a fully functioning, active and healthy 49 year old too. I've tried a few meds and am currently on Zeposia (1 month in). It can be scary to read about all of the things that *might* happen, but they also might not! Take care in knowing that your experience isn't your uncle's, and you have a community here to help.

[Brindisi1]

Welcome, keep doing as much as you can and what you like. Good opportunity to clean up your diet , it helps. I used Whals Protocol concepts but modified diet to my needs. Made a difference. Have courage and go forth with your life. Prayers for your journey.

[Tazmanian]

You have gotten some good advice I don't think I can add to it except find a neurologist you like and listen to them

[Scout4x4]

I lived like that for over 7 years. Seeing psycologist and so on and still lived in fear. Then I was diagnosed with cancer and was living in fear over 2 things. Cured of cancer but of course not MS.

I was having pain in my shoulder and went to an Orthopedic Dr who told me my shoulder couldn't be repaired but would need to be replaced. That's when it hit me each day is different, and you don't need to live in fear. You just need to accept whatever happens. It could be a MS issue, a cardiac issue, a fall issue and so many more things. I have had 8 years now living without fear and enjoying my life.

[robster1]

Hey BobbIsMine!

I was diagnosed in 2017 with PPMS.

We are all with you. This is a wonderful group of loving, caring individuals who deal with their own issues related to MS and/or LIFE. God bless you friend.

Robbie

[carolek572 CommunityAmbassador]

Welcome to the forum, BobbIsMine . I am sorry to hear of all your difficulties, and that this ‘ms’ is so prevalent in your family. So many here have given you good suggestions but may I add that you go to mymsaa.org for more resources. I look forward to hearing more from you. Keep Smiling

[Mollyabigail]

Welcome, BobIsMine. You are correct - no one can tell us what to expect. We gotta trust God for the future. You just found a room full of friends! We all understand! This is a late reply, but we are here for you. I recommend an MS specialist. (I drive 4 hours to see mine). Prayers & support coming at you!