Terrified

[ElemteacherPK6]

Sorry if I'm posting too much on here lately, this is all still so new to me. I was diagnosed with CIS late last year and started Copaxone in Nov 2018. It all started when my neuro ordered a brain MRI for a increase in headaches/migraines. That MRI showed lesions most indicative of MS.

I had a ton of blood work to rule out other causes. I also had a cervical MRI (normal) and a lumbar puncture (positive for oligoclonal bands). No T spine MRI (should I ask for one)? For a short while, they just had me in the RIS group because my symptoms (won't go into detail about all of them) weren't classic enough for an MS diagnosis. The main one would be some tingling/pinpricks in hands or feet, but that tends to be on both sides, though not necessarily at the same time. I'm not sure if it falls into 24 hours or more since it happens every day, but it comes and goes throughout the day (thoughts?).

Anyway, shortly after I had an episode of nystagmus. It didn't last very long, but woke me from sleep! With everything considered together, my neurologist (an MS specialist) changed my diagnosis to CIS and I started Copaxone.

Back to the title of this post. I am still adjusting to all this, and at times I am absolutely terrified! I'm so scared of all the unknowns. I'm so scared of eventually experiencing life altering symptoms like debilitating fatigue, chronic pain, mobility or cognitive issues, etc. I know not everyone experiences severe problems, but some do! I'm terrified of ever having to switch DMTs because the side effects and risks of them are so scary. In short, I'm just plain scared.

I know no one here can fix this (or you'd all be rich ), but I figured at least we all could relate on some level.

[Jules A]

It is terrifying although what I have found after 14 years is the intensity of this fear will reduce somewhat. My experience is the threat of MS lurking over my shoulder never goes away completely and is something I do think about every day although I have become desensitized due to the extreme horror.

My best advice, regardless of how things go, would be to plan for tomorrow, work as much as you can now if you are able, get your financial and future care ie. advance directive orders in place ASAP.

I have been blessed to be able to work more than full time and have lived life to its fullest in the time since my diagnosis despite and possibly in some ways even due to having MS. I'm hoping you feel more comfortable soon.

[KoKo]

The main one would be some tingling/pinpricks in hands or feet, but that tends to be on both sides, though not necessarily at the same time. I'm not sure if it falls into 24 hours or more since it happens every day, but it comes and goes throughout the day (thoughts?).

Elemteacher

It is not unusual for some MS symptoms to come and go throughout the day.

They are due to impaired nerve signals, and are often called paroxysmal symptoms.

Some info about MS symptoms:

"Paroxysmal is a term for any MS symptoms that begin suddenly and only last for a few seconds or a few minutes at most. However, these symptoms may reappear a few times or many times a day in similar short bursts. They may be painful and disrupt your everyday activities or they can just be annoying. The attacks usually stop after a few months."

https://www.mstrust.org.uk/a-z/paroxysmal-symptoms

Take Care

[pennstater]

You are definitely not alone with your fears. You are still in a new diagnosis phase. With that comes some wild emotional rides.

The fear of the unknown is one of the toughest battles. And with any relapse or change in ability, a battle that gets revisited. Noone has a guaranteed future, but a diagnosis brings that reality front and center. Before a diagnosis, a lot easier to ignore the unknown.

My first year had a lot of ups and downs. The second started to return to normal, but it took a full 2 years to get there, where MS was just a part of me and not dominating my thoughts. I also used a therapist - more as a safe place to get my fears out without feeling like I was stressing my family and close friends. They had their own fears about it.

Plan for the worst, expect the best became my mantra. We bought a rancher, saved, made sure job had LTD benefits, etc.. It evolved into control what I can, let go of what I can't. There are still periods of up and downs, but everyone has that in life.

There are studies that support starting a DMT delays CIS from escalating to MS. There are also studies that show a longer duration between 1st relapse and second, lends to a more favorable long term prognosis. And there are so many more choices in meds should a diagnosis of MS occur.

Just know you are not alone. And don't worry about posting too much. People here get it. Keep reaching out.

[kittysmith]

It gets better.

I can underastand your trepidation. It's a scary diagnosis. I can only speak for myself, but I hope this makes you feel better. I was dignosed in 2008. I have RRMS, so I am blessed in that respect. I have had several bouts of optic neuritis. I've had a bit of spacticity in my leg that comes and goes. I've been at the same job for 14 years. I have only taken medical leave for a flare 1 time in 11 years. It helped that my son was diagnosed with autism a few weeks before my diagnosis, so I sort of put all my energy into making things better for him. I get tired, have a bit of cog fog here and there, but, overall, I have lived a fairly normal life.

Good luck and keep posting. This is a great place to learn about MS and meet some amazing people living with it. It really does get better.

[gargantua]

My best advice, regardless of how things go, would be to plan for tomorrow, work as much as you can now if you are able, get your financial and future care ie. advance directive orders in place ASAP.

Great advice! And it keeps you busy to get all this stuff together. And when you do it you realize everyone else should do it too, and it makes you feel a little more normal as well as happy that you thought that stuff through. For me it lead to some significant communication with people and kind of a redefinition of those relationships when the people realized how much I value and trust them by making them a responsible party, for certain financial or other things.

Hugs to you Elemteacher... we get these challenges because we can handle them.

[Marco]

There have been times in my life when I have to remember to breathe. Getting diagnosed with MS was one of those times. I had been married less three weeks when symptoms flared. Three months later I was diagnosed with MS and terrified what it would mean to my life, to my wife and to our newlywed life.

It was then that I found MSWorld and began the grieving and education processes. Like you, I had a lot of questions, many of which had no answer. So don't feel bad about posting a lot, asking questions, or just telling people that you are "terrified." Most of us have been there before and sometimes more than once. The other thing is your post will help other people now and into the future, so thank you for your post.

Like others have said, for most people MS gets easier overtime. The symptoms were troubling enough, but the diagnosis is often overwhelming. Then reading some of the horror stories online and it definitely can be terrifying. So don't beat yourself up for being normal. I believe it takes a year or two to get over the initial shock, get your legs somewhat back under you and realize there may be a path forward. I personally believe you are doing great considering what you are facing.

Please consider starting counseling or look for a local MS support group. MSWorld is great, but sometimes you need to see a real face instead of a computer screen. I wish you could see the faces of the people who have responded to this post. All kind and loving people that want nothing but the absolute best for you.

Please keep us updated on how you are doing, what obstacles you are facing, and what questions you may have. You may also want to start a written list of outstanding questions for your neurologist. That way when you have your next appointment you're ahead of the game.

I wish you well....

[Mamabug]

... Back to the title of this post. I am still adjusting to all this, and at times I am absolutely terrified! I'm so scared of all the unknowns. I'm so scared of eventually experiencing life altering symptoms like debilitating fatigue, chronic pain, mobility or cognitive issues, etc. I know not everyone experiences severe problems, but some do! I'm terrified of ever having to switch DMTs because the side effects and risks of them are so scary. In short, I'm just plain scared.

I know no one here can fix this (or you'd all be rich ), but I figured at least we all could relate on some level.

Yes; you're correct. Even though our symptoms and our stories are different, we can relate on some level.

And, yes; it alters our lives. But we learn to live with a new "normal"; we learn to find different things to be thankful for.

You were dx early, got on a DMD early and can begin to make dietary and lifestyle changes that can help you to delay progression. Many of the most debilitating symptoms may never affect you.

[ElemteacherPK6]

Thank you everyone so, so much for your support! I am already in counseling (anxiety and depression actually started long before this diagnosis, but only about a year and a half ago did I start counseling). Thankfully the person I am seeing now has been super helpful. I will look into MS support groups, I just have to figure out if that is the best option for me or not, both with adding another thing to my schedule, and possibly seeing more first hand what the future could hold, but then again like you guys said it would be real live people and I would see not just their scary stories, but also how they're still living life.

[Marco]

I will look into MS support groups, I just have to figure out if that is the best option for me or not, both with adding another thing to my schedule, and possibly seeing more first hand what the future could hold, but then again like you guys said it would be real live people and I would see not just their scary stories, but also how they're still living life.

People at my support group are pretty tight and oftenn see one another more often than just the monthly support meetings. They go to yoga together, attend seminars, meet for coffee or whatever. It's pretty cool because we all understand the struggles each other are going through.

I do understand your apprehension about seeing people with obvious disability. When first diagnosed I shutter when seeing people that needed walking aides.

At the support group there are people, including me, that use assistive devices for locomotion. At 50, I am the youngest person who uses mobility devices. I started using a cane approximately 28 years after disease onset. Of course, I wasn't diagnosed until I was 40 so there was already residual damage before going on medication. Had I been on medication earlier, my condition would probably be better today. Fewer lesions, fewer relapses, less progression and less disability.

Nevertheless, my life has more meaning today than before my diagnosis. I take fewer things for granted, appreciate the smaller things and focus on the more important aspects of life. For some, a MS diagnosis becomes a reason to wallow, but for others it's the catalyst to really start living.

Again, I think you are doing a great job. Hang in there - it gets easier. I wish you well...

[ElemteacherPK6]

Nevertheless, my life has more meaning today than before my diagnosis. I take fewer things for granted, appreciate the smaller things and focus on the more important aspects of life. For some, a MS diagnosis becomes a reason to wallow, but for others it's the catalyst to really start living.

Again, I think you are doing a great job. Hang in there - it gets easier. I wish you well...

Thanks so much Marco! I think stuff like this is the benefit I could gain both from this board, and from a "real life" support group. I appreciate your support and encouragement so much!