Newly diagnosed 24 year old with MS
 

Hi I'm Luke, and I'm 24. I'm hoping to get some advice and direction from this forum. My story begins about two and a half months ago. The last 2 years have been really difficult for me, my father passed, I got a divorce, and late last year I had 2 surgeries within a month. Emotions were high and up and down. I've always been an emotional person, and I've struggled with depression with most of my life. I had began going to a new church after my surgeries, got a new job as well. Things were pretty normal for me until this year. For some reason I didn't like my job anymore, nor the people at my new church, so i decided to leave. My emotions were in the downward spiral again. So earlier this year I decided to go to my family doctor for some emotional help. I explained all that happened to me, and he said that he thought I had type 2 biopolar disorder. So he put me on Topamax. I took the meds, and after a weeks time almost, i could'n't hardly sleep and felt bad all the time. So I went back, and he prescribed Klonopin, which that helped a lot getting my sleep back into order. I got that medicine on a Friday.

The next Thursday, I was driving to my church, when I suddenly started having double vision plus I didn't feel good at the time. This lasted all day long, and thank God I got home safely. So this is where the big journey begins...I end up going to my doctor the following Monday, he said that I needed to see an optomologist, a special eye doctor. I went, and they said nothing was wrong with my eyes and that I needed to see a neurologist asap. So I went that Wed, and the neurologist did an MRI on my brain without contrast, and three blood tests. The blood tests came back negative, but the MRI showed a spot on my brain. He then said to do an MRI with contrast, to see if the spot reacts to the contrast, in which it did not.

At this time also, my family doctor took me off of Topamax and Klonopin to see if the double vision would stop. And it did not help, and that was a month ago that I've been off. Most of the time double vision happens when I'm in a riding vehicle. The doctors have stated that I cannot work or drive until their is an answer to this. I have had headaches everyday, not escrutating ones but ones that hurt nonetheless, for one month straight. I was told a few days ago that I would be going to the hospital today and possibly to stay a few days so they could run tests. However when I got to my neurologist office today, he told me that instead of doing hospital tests such as a spinal tap, that he would go ahead and confirm that I have MS, or really the last step before MS. He told me that I would start Refrib shots soon, and that for me to see him in 3 months to have another MRI done to see if the spot moved or advanced etc...

My question to you all is I have been without work and I had to even turn my car in because I could not afford it, is that should i get a second opinion, or are there any tests left to do....I am really upset at all of this to be honest. I need answers and even the doctors are saying they don't know what to do next other than just wait and see the treatment shots and the MRI. I'm afraid. I was actually excited that they were going to do tests because then we could find out more...but instead I got diagnosed and it's another waiting game. Please help me if you can.

Hi Luke. Welcome to NeuroTalk.:)

From what you say in your post, it seems your Neuro
suspects MS, but not yet willing to commit to a DX.
A second opinion is a good thing to do or you could
relax and "wait and see", which is what a bunch of
us do or have done.

In the meantime, if you have symptoms that are
severe, then ask your Doc/Neuro/Optho to treat them,
to give you some relief, while you (wait and see:rolleyes:).

I hope you will like it here and keep us informed
as to how your DX journey goes.

Take a deep breath. Stress is a nasty trigger for
MS symptoms.:hug:

hi luke and welcome to NT,
i don't think there's anything wrong with getting a 2nd opinion, especially when you're dealing with something serious like probable MS. your dr must already had dx'd you if he's wanting to start you on MS meds.

did they include any of your spine in the MRI?
is he dx'ing you with 1 brain lesion?
sometimes doing a spinal can be helpful if they find the results they're looking for which is something called O bands. 2 or more can indicate MS.

you can look for an MS specialist for a 2nd opinion. to find 1 call 1-800-FIGHT MS. they will hook you up to your local MS society and they can send you md's for referral. you can also try to find an MS opthamologist to check your eyes.

these options are your choices to make. you are your own best advocate.
start to keep a medical file on yourself. ask for copies of your mri's and test results. other drs you see will want to see them. that gives you more control over your illness, whatever it may be.

you may also want to research the current MS meds. you will learn a lot about the drugs and you can decide which 1 you want to take, if any at all.

the interferon meds can give you flu-like side effects. i was on copaxone for 10 yrs and have done well. that's a daily shot but no side effects (se's).

i know there's a lot to learn. try to take 1 thing and 1 day at a time.
we're here for you. MS isn't a death sentence. no one, not even healthy folks, can see into the future.

please let us know how you are.

Hi Luke.:)

Sorry you need to be "here." Welcome!

What Sally and Nancy have said is very good advice. I also think a 2nd opinion w an MS Specialist would be appropriate.

If you have a history of depression, I would steer clear of interferons, especially Rebif.

I hope you have a friend or family member to confide in.

ANN

Hi there, Sky... take a deep breath and don't get too worried. I did worry for a long time(I knew it could of been MS) with reserching the net for the symptoms I was having. I fell due to a bad head spinning spell one day and that was it...I called mom and said we had to go get this "thing" checked. I actuallly went to the emergency room that day. My Symps were going on for almost ayear before I decided to do something. I always brushed them off as high blood pressure or something. Well it didn't take long before they told me I have MS.... and the scarring was already along it's way. Some damage was already set in, because I didn't get checked out when I should of been.

You're doing it right...you got in there and things are being done...now just try and calm down and take it slow. And yes I would get a second opinion after hearing what you wrote......err I should say seeing what you wrote lol. "brain fog"

Thank you for your responses.

The big problem with getting a second opinion is that I don't have the resources aka the funds to do so. My mother actually paid for the neurologist and mri visits and that was a lot to pay. So I'm out of money at this time.

I'm really new to all of this and I feel better than I did yesterday, I try not to think about it right now. I've just kept myself busy, usually just surfing the web.

Questions for you:

-Does DX mean diagnose?

-Why can sometimes only double vision happens while you are in a moving vehicle?

Now to answer some of your questions:

-I only had 2 MRI's done on my brain, not my spine. They also did 3 different blood tests, but they came back negative.

-He is not only diagnosing me with just one lesion, but the fact that I have had transient double vision, blurred vision and headaches.

-He is diagnosing me with MS for medical records, in case I file for disability before my next MRI in three months, if I am understanding him correctly. I have enough evidence, he said, to diagnose me with MS.

-Refrib is the medication he wants me to try. I was told a nurse is suppose to come and give me the first few shots in my stomach.

-My doctor knew that I was on bipolar meds before, and was taken off.

-I have so much stress, esp the last 2 years. my father passing, divorce, 2 surgeries, and now this. Things were better for a few months after Sept, but this year hits and you know the rest.

hi luke,
i don't know the answer about your vision but yes, dx means diagnosis.
sx = symptom, tx = treatment, h & p = history & physical.

just monitor your mood with the rebif. it's an interferon class drug and those can cause depression. you'll know. that's 1 reason i was on copaxone. i had a hx (history) of depression and did well on the copaxone.

i know you're dealing with a lot. we're here for you.

I just want to say welcome, you are in the right place and I lOVE your name!!!

I don't have double vision, but I do have an issue with feeling "off balance" when I drive. I'm sure I'm off balance at other times, but I don't feel it as acutely as when I'm driving.
I don't know why this is and I have not found a doctor to explain it to me. I did have a person from one of my support groups send me a link to a similar condition and it was neurological (not inner ear). So after all these years I chalk it up to that.

P.S. If your docs say you can not work, file for disability asap. Get that ball rolling because it takes a long time after acceptance to get Medicare. If you can not work perhaps your State has a program to help you short term....you may get some help with medical too. Check into it.....and most of all......DON'T PANIC! My first bout of MS issues was frightening but it got better. :hug:

I did file for disability online today. The only thing they need I believe is my W2 form. My nurse had said that if they needed records that they would call them. Is this true?

Yes, that is true. They will request information from your doctor. If your doctor has stated that you can not work, then you are at an advantage. You may want to give your doc a heads up that you have applied for SSDI. There are several factors that SSDI looks at and one of them being your age. You are very young so that will be an issue. The other is that you can not do
"sedentary work". You may get a call from the SSDI office to set you up with an appointment with "their" doctor. Don't be afraid of that. Just be sure to follow through with what they want.

I filled out all the paperwork at home and sent it in to my local SSDI dept. Then when they received it, they called me to give me some information on what to expect if I were accepted or declined. You may get this phone call too.

In the mean time, I would check with your state to see if there is any immediate help you can get with your medical bills. I imagine this would be through Medicaid. It doesn't hurt to ask, and many states have short term help available.:hug:

Some time in the future you may feel better and want to return to work. SSDI has a program that allows you to go back to work for a trial period to see how it goes. I received disability at age 52 and I am bored staying at home! :)

I had this thought today. I have sort of a slumped back. not real bad, but its noticable. they didn't do an mri on my spine, do you think they should even after dx'ing me with MS?

MS demyelination can cause debilitating fatigue, which
can cause you weakness and to slump.

Having an MRI after you've been DX, is a little redundant,
unless they suspect something else.

:hug::hug:

Yea I understand. I am suppose to be getting my first treatment Friday of Rebif.

What should I expect for side effects for my first dose?

Common side affects of Rebif:
http://multiple-sclerosis.emedtv.com...e-effects.html

Sounds like it is pretty well tolerated. I hate the shots....been doing them for 11 years and I have just gotten the okay from my doctor to try the new MS pill: BG12

You may want to start searching the internet for disease modifying drugs used in MS so that you have an understanding of how they work and the effectiveness of each.

So sorry about the slumping. I began watching my feet a lot after MS and I always look like I'm humped over a bit. Sometimes my body feels like it is too difficult to stand up straight! When you can....pay attention and watch your posture. Good posture is good for your over-all health and there have been many studies to prove it.
Get yourself some good B12 vitamin supplements and see if that helps perk you up a bit. You can't OD on it so its okay to try!

To help with bills, you can also call the hospital financial department. Any time you have a bill with them you can apply for financial aid. I got 75% of my bill wrote off. It all depends on your income and the bills you have to pay, so you will probably get even more of a discount. But most doctor's offices don't have this option available. :(

I have double vision, constantly. I don't notice it being worse when riding in a vehicle in general. I do notice that being in a vehicle at night is worse, while it's raining is just as bad as night time, and while it's raining at night is the absolute worst!

I was 23 when I was diagnosed. I know it's scary. But you did find a great place for support. The people here are amazing.

I'm sorry for all you've been going through.

Since this started about three months ago, there is a chance that this is a relapse and it might get a bit better, especially after you start the Rebif.

When I was first diagnosed, my doctor told me that Rebif was very powerful and if I started to have severe symptoms, such as those affecting vision, they would use that. I took it for about five months and the shots were the easiest of any I took to date.

They might add an antidepressant at some point because MS can have depression as a symptom and interferons can have that as a side effect as well.

It sounds like your doctor is doing all of the right things so far. If you were having mobility problems that might make them want to look at the spine.

God bless you, I hope you'll feel better soon. :hug: This is a good place for support.

Hi All,
I am new to the forum, and at present am looking for some input. But that will be another post. I was reading and felt compelled to offer an option to Luke.

Luke if your doctor is going to put you on Rebif, there is a site- mslifelines. If you are not insured, they offer financial assistance programs. My son's friend also has MS and through the lifeline program, he only pays $50.00 a month for his care. They have several programs. I hope this info may be helpful to you.

thoughts are with you
RennyB

Welcome to NT! You have gotten some great advice so far and I don't have much to add, but wanted to welcome you. I know this must be hard on you and scary as well. Hang in there! We are all here to help you through this.:hug::hug:

Thank you all for the support. I know about MSLifeLines, was introduced to them officially this week by phone call. My Rebif is paid for since I don't have any income or insurance so that is a blessing. I just started back taking Topamax 25mg for my depression per my doctor. I'm waiting for my nurse as I write this to take my first dose of Rebif, I think the first dose is 8.8 and will gradually increase.

Even though I have been diagnosed with MS, and I might have asked this before, but I've thought about it again per someone's comment, but should I have an MRI done on my spine?

Your neuro, may not have found it necessary, this time around, for your dx. Perhaps, ask, next appointment. MRI's are usually every 6 months, to a year. I'm sure they'll want to see if the Rebif is working, as it should, to slow progression.
That's been my experience, albeit Copaxone and Avonex.