Not What I Thought the New Year Would Bring

[migjh]

First of all, thank you to all who haveposted on this site. In my search for any form of information and direction, Icame upon this site and through your stories; I have found some of what I waslooking for.

A month ago I started having pain in my left eye when moving it. Then it gotbad......developing into headaches. I broke down and went to the ophthalmologistwho gave me steroid drops and wanted me back in a week. After a week my visionwas blurry and his staff performs a bunch of tests. When you're doc sits downand says.........."ok, let's have a talk" it can’t be good right?Optic Neuritis was his call and an MRI was ordered. He went over what couldcause the ON and the last thing he brought up was MS. Not what I was expecting.Maybe something along the lines of peel 20 pounds and your vision will comeback or something is in your eye from all the time in the woods lately. Nope, Igot a referral for a MRI and a number for a neurologist.

One MRI later and I am sitting in the neurologist’s office. He digs deep intohis medical training and gives me a tickle test. Ok, it was more than ticklingbut it seemed almost silly at some points. Later on I learned that it was thefull neurological test that is always performed. After that, we sat down and hereviews my MRI report and drops the bomb, “I want some more tests but I’mpretty sure you have MS.”


Holy crap right? Get all the tests done andcome back and we can discuss more. Plus I’m going to get three solid days ofsolumedrol via an IV.

Christmas week was fun. IV treatments,bloodwork, chest x-ray, and a c/t-spine MRI. Back in his office can he reviewsall the tests, tells me that I am dangerously low on vitamin D and that allother possible diagnosis’ are ruled out. He tells me I have Clinically IsolatedDisorder with a high-risk of developing MS due to the ON and the MRI results. Wepeppered him with about 2000 questions and he answered every one of them andtook a lot of time.
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Now is where I don’t know where I am. I amgoing to be starting on Copaxone soon. Every day seems to bring more questions.Anyone that is reading this I’m sure can relate. I don’t look sick. I don’tfeel sick. I don’t think I’m sick. I’m constantly cold and tired but that couldbe winter and exhaustion finally setting in. My vision is almost back tonormal.
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I just don’t know what to do now. If I tryto look for answers, I come up with 8 more questions and sometimes I don’t evenfind the original answer I was looking for. It would be nice to just call someone and say “Hey,what about this.” Maybe that does exist.

Thanks for reading, sorry I am long-winded.I’m sure I left a lot out too.

[Seasha]

Welcome to MSWorld migjh!

After one month from onset, this is probably not what you expected, but you've come to the right place to get support and good information about MS. ON was my presenting introduction to MS, but it took 10 years for me to get a proper dx. You are lucky to catch it early and get on a DMT (disease modifying treatment) such as Copaxone right away.

I don’t look sick. I don’tfeel sick. I don’t think I’m sick.

This was me saying the same thing 26 years ago. I had many, many wonderful years of good health before my body started on a downhill spiral in recent years. I am hoping your journey goes smoothly~

Ask loads of questions here! We all learn so much from each other.
Take care

[JerryD]

I am sorry to hear your story but it is not uncommon. Many of the things that you have mentioned are similar to my own original symptoms , six (6) years ago. Let me tell you from my experience . There is no reasonable expectation of anything good going for you if you truly have MS. You must seek out all of the answers for yourself. Get the best advice that you can get and go for it. Good luck This board is full of many people with diverse experiences. It is a great sounding board . Don't be a stranger !

[TaoWarrior]

That is pretty much exactly my story but I didn't get the CIS DX so didn't start a DMD for 3 years after that. The neuro pretty much told me it would probably grow to be MS but didn't start me on anything.

The good news for you is that for those 3 years my symtoms were so minor I really could ignore it and did. I lived life like any healthy late 20 early 30 guy would. It wasn't till another big one hit that I went back to a neuro and got the MS DX and started Avonex.

In hindsight not sure which would have been better 3 years with no DMD but with the ability to ignore the future (and not have to deal with the DMD) or starting the DMD early. I'm now over a decade in and have major mental issues and minor physical issues if I had started the DMD early might both be less, good chance of it but looking back those 3 years sure were nice

I would also suggest looking into Gilyena it's what I have been on for about 5 years now. No shot once a day pill and for me I have tolerated it extremely well. It is a lot easier to ignore MS with a once a day pill instead of a shot and this early I would say taking a DMD and ignoring it are the way to go. You get the benefit of a DMD (a very good one IMHO) and the mental benefit of peace of mind by not thinking and worrying about it.

Also if you live in a medical marijuana state you just scored yourself a life time MM card so there is that. I bounce from the guy who jokes about MS to the guy who is in a very dark place with MS good news today I'm the jokester so probably much better for a pep talk. Life will go on MS sucks but it sucks in slow motion so enjoy life while you still can. The better physical shape you are in the slower it goes so time in the woods is a great DMD. Hike the Appalachian trail, Climb a mountain do what you do, and as much as I hate the expression learn to YOLO a bit.

[bosman]

migih-
I went through the same thing, just a few months ago, in the fall.
I am healthy ( I guess not anymore), fit guy, have a family, building a house etc.
I am not taking any meds for anything . Nothing.
Well, read my story.
I was just like you- all of the sudden, ended up in neuro office and felt like " what am I doing here? It cant be real!". Got Dx, went through denial phase ( I am sure they are wrong) and now I am waiting for the second opinion in MS clinic.

Good luck to you and all of us. Please keep us posted. This forum helps a lot and gives a lot of good advises and info.

[hunterd]

WELCOME TO MSWORLD MIGIH! Glad to have you. But IM sorry, why.
I was diagnosed in December, and no one had

There area return line for it! What a Christmas present, HUH! Merry Christmas, oh, by the way, you have MS.
Okay, I am all done crying about it.

I got my diagnosis in 2001. And I am still "out in the woods". I have learned ( and I am a slow learner) how to adapt and overcome things. It was not easy, and it was not a fast process. Just this year I learned a few new "tricks" that will prolong the time I spend out in the woods. If you want to talk about it further, we can. Either by email or here on the forums.

read through some of the questions you might have ( you can enter them in the search). You will get many answers to some of your questions, just remember, the best person to answer your questions is your doctor. And you are in a place that you can ask questions, most of us have been there ourselves.

Good luck