dekkor 20/11/17
Last reply 7 months ago
I was diagnosed with MS today

I had my first MRIs this Saturday and was scheduled to see my neurologist to review the results in just over a week from today. Instead, I got a call early this morning to come and see the doctor immediately. I was shaken by this and feared they had found something dire that needed an urgent response.

The good news is that the did not discover some unexpected and immediately life threatening condition.

The bad news is that they did find multiple lesions in my brain and spine.

My neuro has now referred me to a MS specialty clinic. I have an appointment in two weeks time where I guess we’ll start the process of determining the disease type and what treatment options are available to me.

I’ll admit that I’m feeling rather isolated and scared. Any words of encouragement or advice for the newly diagnosed would be much appreciated 🙂

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ms-man
8 months ago

Dont be afraid, its not the end of the world, MS is manageable and can be brought under control with the modern therapies that they have nowadays, I can relate to how ur feeling inside, when i went through similar to urself I was scared and found everything to much to take in, and wondered if i was finished in life, but now I look back and feel stupid for worrying over nothing, because after starting a DMT iv never looked back and got on with my life as normal, stay positive u will be fine and can live a long life.


heatheranddizzy
8 months ago

Completely agree with ms-man. 🙂 Just make sure you go prepared to the specialist with any questions you may want to ask. It is scary but it’s different for everyone and many people live perfectly normal lives with MS. Just remember to keep positive and look after yourself. 🙂 xx


londonlad
8 months ago

@dekkor

Glad you found this site. I can completely relate, to the worry and fears you’re facing. It’s a shock, mainly as it’s not a real understood condition, until you need to know about it.

Give yourself time, to let the news sink in. As mentioned, there are effective treatments available to help, and so much hope for the future.

Not sure if you’re are recovering from a relapse, if yes, focus on rest.
Try not to overwhelm yourself , but work with your doctors to discuss treatments. Read about treatments once you know what’s on offer. And People on the this site, will be available to answer questions or direct you at times when you need it.

I was diagnosed in March this year, and to be honest I was thinking it’s the end of the world and my life, dramatic as it sounds. But I knew nothing of the condition back then.

Today, I’m in my second week of a new job, which so far has been great, I’ve lost nearly 30lbs, and dramatically changed my lifestyle in positive ways.
I won’t say I’m happy to have MS. But I am certainly happy that I’ve used having MS to create changes that I may have never done.

I wish you all the best.


Anonymous
8 months ago

Hi @dekkor I can only echo the comments above. For now the most important thing is to let the news sink in, keep an open mind & most important, & I know it’s hard not to, but try not to worry!!! When I was diagnosed 17 years ago there was a website very similar to this one & it was really helpful talking to people who have MS too. So you’re always welcome here for advice, information,friendship & even as a sounding board for;)

Take it easy man,
Craig


dekkor
8 months ago

@ms-man, @heatheranddizzy, @londonlad: thank you for your kind and positive words of encouragement and advice. I’m glad to have found this site. Being an immigrant with my friends and family far from where I now live makes today very lonely. Having a place to talk about this is a relief 🙂

@londonlad, to answer your question about recovering from a relapse: I first noticed symptoms this past Oct 14th. These have been varied and have steadily progressed in intensity since then.

I don’t yet know what a relapse looks like but something is definitely active. I can’t help but wonder what the “normal” duration of a relapse is? Is there any such thing as normal? I know that some relapses never dissipate but for those that do, does recovery happen over hours, days, months…

Congrats on the new job by the way! Inspiring to hear that your recent diagnosis has been a catalyst for positive change. That’s really awesome!


dekkor
8 months ago

Thank you, @craigsreddie! I’ll take you up on that 🙂


edmontonalberta
8 months ago

@dekkor

Brent; I had spine surgery 17 months ago; I wasn’t healing according to schedule so I met my Surgeon who set up a Spinal Tap & brain MRI. I thought he was nuts (what does a brain MRI have to do with spine surgery recovery?) but went along to keep him happy. Once the results came in, the sh** hit the fan.

Come see the Neurologist immediately so I did… He shows me the MRI of my skull & tells me I have PPMS. He writes down & gives me the names of the drugs that work for other variations of MS – but that don’t work for PPMS. Tells me to come back in six weeks after conducting my research on MS. So I do…

When I come back I get told that there is one drug Ocrelizumab that has a 50% success ratio (whatever that means) but it has not yet been approved in Canada. Basically I am on my own – to be perfectly honest I believe my spine problems are more dangerous; MS is just an inconvenience compared to that.

To make a long story short, the first thing you need to know is what variation of MS you have & available treatments. Then you need to have the proper diet, plus the daily proper dosage of Vitamin D. I was told by my Neurologist to quit drinking & smoking but decided that if he has nothing to help me – then I am just going to live my life as usual.

Life is a journey & we all know the destination. Have fun along the way… 😉


nutshell88
8 months ago

Hi
You said it yourself gladfully its not lifethrestning thing which is great
Think of ms as your invisible annoying friend hehe
I was daignosed 2005 but didnt know till 2010 they did not tell me i was young and since i nevet known i didnt worry or fear so i didnt get sny symptom and im not on treatment since then.
But i do not have lesions on my spine 👍🏻

And remember all your life worries
And all negative feelings are in the brain and so is MS.
so try not to trigger it and be safe


chicolini910
8 months ago

In the interest of truth and information, depression is a biologically based disease that can be brought on by MS; I know, I have it big time. And it’s “depressing” to me that I hear you-all talking about “be positive,” and “MS is just an ‘annoyance.'” I have been a very optimistic person. I was diagnosed with MS in the year 2000. I would have to say the most dangerous of side-effects of MS is depression. Please don’t blame yourself if you can’t seem to “snap out of it” and just “turn off” the negative thoughts.


chicolini910
8 months ago

Just to add–don’t be afraid if you experience depression; there are various treatments for depression that work including talk-therapy.


californiadreamin
8 months ago

@dekkor You are located pretty close to me and are lucky to have to have two good MS centers near by UCSF and Stanford. My wife was diagnosed about a year ago and we went through the same process you are going through now and we go to Stanford because we are located on the penisula.

I think given the quality of the MS Centers in the area, the main questions you might want to consider are:
1) Are there any compliementary treaments that can improve your odds
2) Are there any treatments on the horizon that may impact your decision for a particular treatment today
3) Are there diagnostics that might not be done by default that you should consider now so that you have them for reference later

In this area and given the efficiency you seem to be moving through the process you will likely be given choices of Tecfidera, Gileyna or Ocrevus, but let us know what you are offered. We went with Tecfidera for now. We avoided Gileyna because its a little tricky coming off. Ocrevus is new and has been out officially for less then a year since full FDA approval.

In terms of point 1 above, I would strongly recommend ordering a copy of Overcomming MS:

for point 3 I would make sure you are tested for JCV (they may not do it by default). I would also see if your MRI was a 3T mri and not a 1.5T. The resolution can make a big difference in what you decide to do a year from now. If they didnt do it on a 3T push for another in 6months.

There are a few other things to consider, but I would recommend starting to get familar with things because you can get a lot more out of your appointment if you come in prepared and knowledgable.

Here is a video I would recommend as well. Its long and a bit dry, but its worth the time. Its from a very reputable MS center in the US:


dekkor
8 months ago

@edmontonalberta, thank you for the message. Man, I’m sorry to hear that you are dealing with two serious conditions at once. I’ve been reading about Ocrelizumab, how new it is and how it is one of the only options for PPMS. Do you know whether it is going to have approval in Canada anytime soon? Sending my very best wishes to you.

@nutshell88, I’m glad to hear that you are relatively symptom free. Here’s to no new lesions anytime soon!

@chicolini910, thank you for your honesty. I’m sorry to hear how you are struggling with depression. I too am concerned about depression and anxiety as a comorbidity of MS. I’ll admit to not always having the most positive outlook. Something I need to work on.


dekkor
8 months ago

@californiadreamin,

You’ve given me a lot of practical advice that I’m sure I would not have considered. Thank you. Your wife is lucky to have such an engaged and supportive partner. I hope she is doing well.

I was at UCSF Neurology and have now been referred to the UCSF MS clinic. I’ve only heard good things about this center so I am encouraged.

I see that my referring Neurologist has ordered a battery of tests including JCV antibody. (Wow, that’s quite a startling topic in its own right).

Checking my MRI report, I see that it was 3T MR :thumbsup:

Thanks for the book recommendation (I actually picked up a copy this weekend) and the video. I’ll dive into those next.

You mentioned there are a few other things to consider. I’d be very interested to hear more and would also be interested to understand what informed your decision against Ocrevus at this time.

Thanks again. I really appreciate the input.


edmontonalberta
8 months ago

@dekkor

Friends & family are our support system to get us through life. Ensure your network is strong. Other than that, MS is just a speed bump on the road of life…


vixen
8 months ago

Hi @dekkor. As you can see, you already have lots of support here! I was diagnosed Jan and, based on my mainly positive experiences, I would echo that you must allow time to absorb and process the diagnosis. In the last year for me, because my way of thinking has changed, there are so many positives added to my life now. In a bizarre way, having a diagnosis has given me a unique outlook I wouldn’t have embraced had MS not happened. Reboot, rebuild, seize the days my friend! X


hmcampos
8 months ago

Hey, be strong @dekkor! Initial shock is hard but you can find, nowadays, a lot of support. Plus medicine has advanced a lot into DMTs that will help you cope with it.

It sure is hard to find our you have MS but is is NOT the end of your life as it is. You will keep doing the same as before just with extra attention to details your body will send to you 🙂

Also the book and website @californiadreamin told you about are a big BIG help.

Be strong and never ever give up on you!
H


Anonymous
8 months ago

Man, do I remember that feeling! Kudos to you for immediately seeing/searching for others who might be able to relate. I was first diagnosed with (some sort) of demyelinating disease, like MS. There are other possibilities as MS is, at times, misdiagnosed. That doesn’t mean you don’t have MS. You have a long way to go to determine which variety you might have. Basically, you with be given a treatment protocol and then it’s purely a waiting game. They will monitor you and you will need to monitor yourself to see if feel the disease is progressing, or if your symptoms stay relatively the same. You’ll see one day, you might have one symptom and that goes away and you might have some other symptom. You will sound crazy to everyone around you, but not here. Good luck and try to focus on understanding what’s happening (-:


vickya
7 months ago

What can I say except I am truly sorry you had this news. When I was diagnosed I was sent to the hospital library to research it and I have been doing that ever since… 22 years ago and I’m still learning. So rest, digest the news and then your quest to get all the information begins (and don’t just rely on the medics!). Good luck.


rachael17
7 months ago

It’s such a shock and the uncertainty of MS can be overwhelming, but don’t let it take over your life. Joining this website was a great first step, speaking to other people who understand what you’re going through is the most important and reassuring thing. My advice would be to definitely read and read and read and read……and read, about anything and everything to do with MS! Knowledge is definitely power. Make a list of every question you can think of to ask your specialist, because memory loss and MS go hand in hand unfortunately. Lots and lots and lots of love, stay positive!


purple72
7 months ago

Hi there! I remember this feeling well and I’m so happy there is lots of good advice for you on here! My diagnosis was a little under a year ago so still very fresh. For me, knowing how to handle it (and the unique-ness of MS) is definitely something which takes time so don’t put too much pressure on yourself to grasp it immediately.

I was trying to think what I would tell myself back then – and I’m definitely not the expert – but I guess the main thing which helps me sometimes is that actually (like me) you have probably had MS for a little while, and therefore some of the things you have achieved so far has been with MS (even if unknowingly!). The next few weeks (and possibly months) might feel like a blur but I honestly believe it is better to know than not. Now you’re in control and can take proactive steps to manage your future.

Be kind to yourself and make sure you have people around to offer support x


dekkor
7 months ago

@vixen, @hmcampos, @1stn10, @vickya, @rachael17 & @purple72,

A sincere thank you for each of your comments. My appeal for words of encouragement and advice have been and continue to be so well met within this community.

Right now, my focus is twofold:

1. Try and manage my anxiety seeing as my symptoms seem to get worse under stress.
2. Do as much research as possible ahead of my upcoming appointment with the MS Neurologist so that I am better equipped to ask the right questions and get the maximum benefit from the consultation.

I’ve already received a lot of good tips for #2 and the morale support received her definitely helps with #1.

Once again, thank you. I hope to pay it forward one day.


skoobz
7 months ago

@dekkor

My friend,

Make sure your appointment is with a specialist that actually listen. Ask around if anyone has experience with the specialist.

Its important how comfortable you would feel with the specialist because you’ll have to build trust with him or her.

This is by far my best MS medication . This way i can trust everything my doctor says and i dont have to worry about anything when taking decisions.

I passed by 5 doctors before I finally found the one .

Jc virus test is a procedure they take so they can decide your treatment plan , dont worry about it now .

Regarding how long a relapse stays, it gets 90% for me after my 3rd cortison infusion .

Day 1 i cant get off bed or stand , and won’t move on anything but a wheelchair .
Day 2 baby steps .
Day 3 i can walk again but not much balance .

BUT the relapse will keep a random thing around , forever . Usually a slight vision issue or numbness , a humming bird etc etc . I relapse every 6-8 months coz i over stress my self . dont do that .

I wanted to keep things brief , am sure everyone here covered almost everything . Shows how supportive they are . I kinda wish i had such a support when i first found out i had ms .

You’re brave and lucky my friend … hope everything goes well for you and please let us know what medicine they decided to put you on .

I’ve been on betaferon , gilinya , tysabri , tecfidera and i’ll be on ocrelizumab mid dec . Message me if you have a question about any of those .


cameron
7 months ago

And after you’ve made a special effort to a) do the reading and b) de-stress, I hope you’re giving yourself little rewards: this is the time to indulge in little treats (you need the endorphins). Bring on the chocolate and red wine.
Big hugs, Kay.
PS We’ve all been there and while we can’t walk in your shoes, we’re familiar with the feelings of dread and hopelessness that go hand in hand with an MS diagnosis. Thankfully, most of us have left those feelings behind and are busy getting on with life!

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