I'm struggling to cope with my new diagnosis

[Ant1981]

I'm 36 and was very active and athletic but ever since I got my diagnosis of RRMS a month ago I'm struggling to see how the rest of my life will shake out. I'm in relapse and my symptoms are fading, I'm walking so well now and gonna see a physio theapist to polish it up more, my balance is kinda off but it's not bad, my motor skills on my right hand are improving but the numbness on my face arm and lower leg never go. I will take it easy for a while and see what happens.

im going into my local MS clinic and will direct a lot of these questions to the team assigned to me but I have a lot of anxiety and uncertainty to deal with and it's hard. I'm operational right now and can do everything for myself but I need to get back 2 work and drive soon. I'm not ready just yet to drive and hope that I can in the next few weeks.

now I don't want another relapse and that frightens me a lot. What is going to happen to me? Tough to say but the anxiety is crushung. I need to do other stuff besides research and google everything and the medical staff said "just live your life" but damn in a relapse how do you do that? I need to relax and rest I can't work or drive so I can't live my life exactly like I did right now.

and wen I'm in the MS clinic what DMD will I be offered and will it help or cause more discomfort with side effects I hear friends who know ppl with MS and say that they are doing good more often than not. I'm hoping I'll be OK with lifestyle modifications or some inconveniences and that ok with me as long as I'm not living a life of suffering at 36 it's so young I'm in my prime and so concerned.

does anyone have any advice at this stage in my journey ? I don't want a crappy life (who does?)

thanks from anyone with experienced this disease in the early stages and how it's transformed your life.

-best to all

[Seasha]

I've been following your posts, but haven't even welcomed you yet, Ant. So welcome!

I was 40 when I had my first flare and have lived with MS for 28 years now. I have SP now and did not get a proper dx (and meds) for 10 years, so damage has been done and it's permanent. I'd like to share with you some of the most important things I've learned in this journey.

***We all have earned badges for learning to practice patience. Seriously!!
***When the times get tough, ask and seek help in any ways needed.
***Go easy on yourself - especially when your either in a flare or are down in the dumps.
***Don't compare what you used to do, but rather what you can do now - whether it's temporary or permanent.
***Good mental health plays a huge role in our journeys. If depression or anxiety creeps in, there's help through medicine and licensed therapists (Like you, I was full of anxiety and sought help with medication and a therapist)
***Remember you are not a failure and you have done nothing wrong!
***Lifestyle modifications are important, whether it centers around exercise or food.
***A strong social network is crucial through family, friends & of course, your MS family here
***Make sure you have a strong network of health care professional who not only answer your questions, but will LISTEN to you. Shop around if they don't!

***And oh yeah - don't look to Dr. Google for answers. Use trusted medical sites.

You take care Ant. It's going to be OK.

[dastardly]

Hi ant1981 and welcome to the forum, Im Craig 54yo man
So you have MS, many say if you are going to have MS now is the time to have it as there is so much research happening and new treatments available.

What Seasha said is very true and your life is going to change, I have had MS for more years then I can remember, but while having MS we have had 4 children and now 2 grandchildren so life doesn't end it just changes.

Don't use Dr google to self DX, and yes we all do

Get a good MS neurologist that you trust and can talk to I think this is the most important thing to do you must be able to trust your Dr, I travel 1.5 hours to see mine even when there is a neurologist less then a mile from me because I trust him and can contact him about any and all complaints I'm having

Don't look at what you can't do but what you can do, you have a long and wonderful life ahead of you so don't throw it away living in the past

Having a good network of friends is very important, and no they won't understand what your problem is, you will hear comments like but you look so well and it will grate on you, you can try and explain what is wrong with you, how fatigue makes you feel but they will not comprehend you.

Don't be in too much of a hurry to start DMD, again talk to your neurologist about what is the best plan for "YOU"

When reading forums and other info just be cautious, its like everything in life we get online to complain, its like buying a washing machine we look at reviews but people don't write a review saying what a great machine I just bought because if its working great we forget about it, BUT if it won't work we get online give our point of view so the negatives out weigh the positives in the review even though thats not the case ( are you totally confused now )

Its the same with DMD reviews if it works you don't hear about it, if it doesn't you will hear about it.

Live your life Craig

[Boudreaux]

Good advice above.

There will be good days and there will be bad days. enjoy the good days to the fullest and rest on the bad days. As you go through your days before your next Neuro visit, write things down....Questions, symptoms, feelings...and go through each one of those points with the doctor. Bring someone with you that can help you remember what the doctor said.

I was not able to drive or work during the onset of MS. Took about 2 months before I could get back to it and even then I was so tired. That was in 2002, in fact I was DX'ed October 31, 2002 and had total left side paralysis. Since then I have had a great career, 2 wonderful kids and am very active. I still hunt, fish and have even started Jiu Jitsu. Who knows what my condition will be like in 3 years, 3 months or even 3 days, it could all go down hill but I won't sit around a wait for it to happen, it's going to have to catch me.

Get after it.

[Jules A]

Hi and welcome!
Sorry you have to be here but glad you found us. The first 6 months were the worst for me, like you are experiencing the horror and uncertainty are daunting. As time wears on and hopefully your physical abilities continue returning your racing thoughts will settle if for no other reason than you will be busy living your life again.

I think being an athlete is going to be helpful on many levels. You are coming into this with a physical fitness level that will assist your body to regain strength, you are familiar with the pain/reward of working out hard which is going to be needed for rehab as well as getting back into your exercise regimen and there are multiple studies indicating exercise can result in neuroplasticity which improves your brains ability to heal and form new connections to compensate for damage.

I wish we had a crystal ball because the bottom line is none of us know what the future will bring, nor do those without MS, so my strategy has been to work as much as I possibly can while I'm able to set myself up for financial security. I've always been a worker and investor so this just kind of kicked it into overdrive but it makes me feel comfortable that I'm being proactive. Others take the stance that they are going to reduce stress and enjoy their lives which is probably an even better way to manage MS and find peace however for me that would increase my anxiety so its all about finding your equilibrium...literally and figuratively.

Best wishes to you. The shock will reduce, I promise.

[ClearBlueSky]

Keep your focus on today. Comparing yourself to the past will only cause depression. Looking towards the future will only cause anxiety. It will require much practice. Every time you find yourself in the past or thinking of the future, stop and think how amazing life is right now. Be grateful for what you have right now.

[msgijo]

Hi Ant and welcome to MSWorld.

I too was dx'ed at age 36. Of course my opthamologist had told me 4 years earlier that I had MS and referred me to a neurologist, it just took him 4 years to decide to dx me with MS .
I thought that my life was over. I had a good job, but I had just filed for divorce and moved into my new home with 3 children depending on me.

My first sx's were not as severe as yours, namely my vision drove me to push for answers. The vision problem turned out to be ON. Everything else I could explain away - of course I was tired with the move and set-up of a new home, working a full time job and taking care of my 3 children. And it was no wonder that I was tripping and falling down all the time - just look at the 'yard' which was simply overgrown shrubs and brush.

So yeah a shock. As I recall I went into a 'survival mode'. I refused to do anything that required a commitment over time, like purchase any flowers (my passion) because in my mind that would just be something else for somebody to have to take care of. A burden. For almost a year I sat around worrying about what was going to happen to me and my kids. Just going to work and taking care of what I had to.

Fast forward. I decided that all I was doing was practicing dying, so I started working in my yards again. I started socializing again. I started with 'projects' around my house. And I realized that I could still do things .

I worked at the same job for 15 more years. raised my children - they are up and out now - and I have 3 grandchildren. I remarried about 9 years ago, but I made certain that he knew the possible things that I still faced (even though I was doing well at that time).

Funny thing (NOT) when we got married he was all about taking care of me. We had more disagreements about him letting me do things that I felt able to do than anything else. Then last October 16 (yeah exactly a year ago ) he had a brain hemorrhage and spent 2 weeks in ICU. Since then I have been filling both his and my roles around here. At the end of April he had a 12 hour brain surgery. It removed the AVM (the cause of his hemorrhage) but left him with numerous cognitive defects that are similar to the things I have tried to explain to him as I had like things due to MS. He tells me hat he doesn't like my world . This was not the life that either of us had envisioned or wanted to assume. I am so grateful that I have been able to handle the role of taking care of both of us this past year without a relapse.

As Jules A said "the bottom line is none of us know what the future will bring, nor do those without MS".

You have been given some great thoughts here. The only one that I would add is that you should look out for signs of grieving and I suggest that you even google that one. It is natural to grieve the life that you had, and the plans that you MAY have to alter. So look up the stages of grief and be prepared if/when they show up.

As far as a DMD, I agree to take your time. Do your research on them. I started on Avonex (there were only injections way back then) and I chose that one because it was once a week and I have a needle phobia. The one time that I was able to actually put a needle in me I passed out! So I took that DMD as much as I didn't take it. Gilenya was the first oral approved so I started on it and took it for 5 years - until the side effects became too much for me. I am now on a vacation, but my neuro has already told me that I have to choose one at my next appointment (next month) .

I want to leave you with the thought that I will be 56 later this week, I've had MS over 20 years and I am still able to walk, drive and pay the bills. I shop and do limited yard work. I take care of the grandchildren when I want to and there is even a volunteer thing that I do. In addition to taking care of my dh.
MS is not a death sentence. I have had to change how I do things, but I am still able to live a good life.

I like what ClearBlueSky said "think how amazing life is right now. Be grateful for what you have right now".

Take care.

[Ant1981]

You guys are great

That is so reassuring hearing all your stories and I'm hopeful that my life will be fulfilling.

My my symtoms I would not say that they are severe, just annoying as hell. Numbing is the most Annoying one but my balance, walk, and motor skills greatly improves on its own, and pyshio therapy aids to polish these as well.

its the unknown future that causes me great anxiety like if another relapse hits then all my recovery and rehab is lost and it's back to sqaure one. Will I relapse again? If so when? Next month? Year? Decade? Who knows? Nobody does and that worries me immensely.

thanks for all your support and stories. They all give me hope for my future.

-Best to all

[TheBeans]

Hi Ant and welcome to these forums.

I was diagnosed in 2003 and I remember my first year or so after being told I had a chonic disease. Three things really helped me to get thru that time and they may help you too:

1) keep a daily MS journal, even if it's only one or two lines. Jot down how you feel physically, jot down how you feel emotionally, jot down if you've had to contact your doctor(s). This will seem like a huge pain (and sometimes it'll make you angry) but it will be a huge relief to have a history to look back on that will help you identify when things start to go south for you. It's also something you can take to your doctor appointments and share with your docs---this way you don't have to remember when such-and-such began...just look in your notes.

2) Visit these forums frequently. They are 'of the people for the people' and we all have MS and some are family or caretakers of those of us with MS. There's no-one better who will 'get it' than those who stand in your shoes. Whenever you are unsure of something that may or may not be MS, whenever you are scared or angry, this is a safe place to reach out to. Whenever you have a question about what you think you already know, see if it's something anyone else has ever dealt with and if they did, what helped? We are all here to help each other and these forums will help you keep your sanity in check when you sometimes need extra assistance.

3) Remember that you have the disease....that is does not have YOU! Live your life to the best of your abilities and dreams and when MS gets in the way, go around it...go over it....go through it. Keep your focus on finding ways to live your life, no matter how it may change. And it will change, even if you feel great now. MS doesn't go away.

Lastly, a little bit of cheer: when I was diagnosed, there were only 3 treatment options out there. Only 3. And we were all told that having easier ways of treating ourselves (other than injections) was a pipe dream. Now we have so many other options. Research and findings are speeding up where MS is concerned, every single day!