Newly Dx...what now?

[kwatss]

Hello everyone, I'm Kacy. I am 25 years old and a mother of one gorgeous 20 m.o. daughter. I was diagnosed with MS on Thursday (4/15) and don't really know where to go from here...

Here's my little history: Starting in 2007ish I would get a big black blob/blur thing in my left eye. It completely blocked vision and would stay for an hour or more. The first time it happened I had been drinking the night before so i thought it was just from that. Then in 2008, while in labor with my daughter, the spot came back. My OB freaked and ordered an emergency C-Section after a talk with the neurologist. After she was born, I visited with the Neuro for the first time. He ordered an MRI of the brain and called me 2 weeks after to tell me there were some abnormalities but nothing to be concerned about. He wanted me to come back and talk about my history a little more, but I never went back. A normal MRI to me meant I was good to go.

I work at the hospital where all of this was done and one day I ran into my OB in the walkway and he asked if I'd ever been back to see Dr. Smith (my neuro) and I told him no. He said "you really need to." So, after that and having a few new symptoms (numbness in my thighs, severe headaches..etc.) I decided to go back 3 weeks ago. He ordered a second MRI of the brain to compare the two. This past Thursday was my follow-up from the MRI and he diagnosed me with MS. I had a spinal tap on Friday (HORRIBLE!) to see how far I am and what to do now. I am starting Topomax today then Copaxone after my spinal tap follow-up on the 27th. So...there ya go.

I am so scared. What will happen now? Besides my symptoms, I've never had an "episode" of any kind. Am I supposed to be scared every day wondering when this will happen, what it will be, how bad it will be, WHERE on my body it will be? I apologize for the long post. Any advice or guidance anyone can give would be so great. Thanks so much.

Kacy

[wkikta]

If you believe that you will be able to handle whatever comes, you will do your best. It can be a challenge, but you are making a good first step, coming here to help educate yourself. The NMSS has a short program called Knowledge is Power that can give you a lot of information to help. Check them out at: http://www.nationalmssociety.org/

[hagelicious]

I don't have any advice, just commiseration. I too am new to MS (not definitely diagnosed, but more than likely MS). Testing and stuff done last week. I completely understand what you are going through.

[autotech]

Just out of curiosity where are you from (I am wondering if that is the same Dr. Smith I seen)??

My suggestion on what you do from here is take it day by day!! And, believe me I think we are all probably somewhat scared about the future, the way I deal with that is do whatever it takes to put it out of my head and try to carry on my life the best I can..

[GaryGo]

I suppose you don't have much choice but to take things day by day, but I know that's not saying much. I started this week on Copaxone, and I am glad that I can do something to keep the disease mild. There is no perfect treatment and no cure, so I don't know what the future will bring. I have not been on Copaxone long enough to know if it's working.

But, my investigations and doctors indicate that Copaxone is a good choice for me. I had no new lesions from June '09 (first MRI) to January '10, so maybe my body will never produce a new lesion, but Copaxone is an insurance policy.

Every day, you can maintain your treatment and maintain your support system (like this forum). Best wishes.

[twisterred]

Hi Kacy,

I was scared to death like you 18 years ago. I'd just been diagnosed with MS and felt doomed. i am so sorry about the diagnosis if MS.
Congrats on the baby! How wonderful.
Through love and support of my hubby, support groups like this one, rest, reducing stress, occasional steroids and daily Copaxone, I am thankful to be able to say I'm doing alright. Life is good and i have learned to let go of being perfect. My health is too important.

Hubby is great and has been so good all of these years.
We have had plenty of times both of us have wanted to make the MS monster leave, but it is like an unwelcome visitor we are always aware of.
I don't have children by choice, but I know I can do most things, just a bit slower at times (not always, sometimes i run circles around hubby).

Learn all you can. MS is a progressive disease, so ignoring it won't make it go away. No herb or drink will cure MS, so don't thank that for now, it can be treated naturally. If it could, we all would be taking it.

Laugh and don't become bitter.
Learn when your body is telling you to stop and rest, without feeling guilty. MS fatigues people, so it is just a part of the disease, nothing personal. We need to rest or will pay a price later. So, prioritizing becomes super important. Letting little things go will help.

I've been on Copaxone since 1996 and it has worked well for me. It takes a year or so to really get in the body and working full speed, so don't give up.
Don't worry if others see lumps, bumps or bruises on your legs in the spring and summer. They are so unimportant compared to walking. Copaxone will give you some big, red spots in the early months/year but it will get better with time.
Anti-itch get by Benadryl really helps me. I always put it on after an injection. It works the best IMHO.

I'm new to this site, but not MS, so please believe me.
Looking at me, (when I am rested), you'd never know I was sick. At home, hubby sees that I get fatigued and helps as much as he can. We have learned we are a team, so we don't blame each other when times are tough.

We were married about a year and a half when I was diagnosed. I'd had double vision before and gone numb from head to toe. Thanks to always calling me doc earlier than later, flares have been somewhat short.
MS is never a time to tough out an attack. Always call the neuro if a symptom comes and stays over 24 hours. The earlier flares are addressed, the better.
So glad you are taking Copaxone. Finding a med that works is great!
Stick with it of you can. Changing meds has proven over time to not work. I have some friends on a different support group who would like to take Copax. again but can't because their body now rejects it.

Nice to meet you and hope that helps some.

Hello everyone, I'm Kacy. I am 25 years old and a mother of one gorgeous 20 m.o. daughter. I was diagnosed with MS on Thursday (4/15) and don't really know where to go from here...

Here's my little history: Starting in 2007ish I would get a big black blob/blur thing in my left eye. It completely blocked vision and would stay for an hour or more. The first time it happened I had been drinking the night before so i thought it was just from that. Then in 2008, while in labor with my daughter, the spot came back. My OB freaked and ordered an emergency C-Section after a talk with the neurologist. After she was born, I visited with the Neuro for the first time. He ordered an MRI of the brain and called me 2 weeks after to tell me there were some abnormalities but nothing to be concerned about. He wanted me to come back and talk about my history a little more, but I never went back. A normal MRI to me meant I was good to go.

I work at the hospital where all of this was done and one day I ran into my OB in the walkway and he asked if I'd ever been back to see Dr. Smith (my neuro) and I told him no. He said "you really need to." So, after that and having a few new symptoms (numbness in my thighs, severe headaches..etc.) I decided to go back 3 weeks ago. He ordered a second MRI of the brain to compare the two. This past Thursday was my follow-up from the MRI and he diagnosed me with MS. I had a spinal tap on Friday (HORRIBLE!) to see how far I am and what to do now. I am starting Topomax today then Copaxone after my spinal tap follow-up on the 27th. So...there ya go.

I am so scared. What will happen now? Besides my symptoms, I've never had an "episode" of any kind. Am I supposed to be scared every day wondering when this will happen, what it will be, how bad it will be, WHERE on my body it will be? I apologize for the long post. Any advice or guidance anyone can give would be so great. Thanks so much.

Kacy