newly diagnoised

[stand alone]

have been waiting 5 years for dx, now dr are telling me it has gone to long with out treatment, so they don't feel a lot of the meds will work. They want me to start out with Tysabri, and I have some concerns about it. I have a lot to learn, and to understand!

[Camsue]

Hi stand alone

welcome!...sorry it took so long, but now they're making that difficult desicion (choosing the med) for you..

take care

[JanG1360]

HEY

SORRY TO HEAR BUT WELCOME. I WAS DX JUST OVER 30 DAYS AGO AND IM STILL WAITING FOR MEDS. FEEL FREE TO FIND ME ON FACEBOOK IF YOU WANT..

[Yogi]

Welcome. I'm new here myself. Sorry it has taken a while to get your diagnosis. It's been 20+ years for me with a "possible" then a "probable" then a "most likely" set of tentative diagnoses along the way.

[22cyclist]

Welcome Stand Alone. I know it can be scary even after 5 years of waiting for a diagnosis. I am sorry you were diagnosed with MS. Sometimes everything has to into place into place and then you get a diagnosis. I also know it is frightening to start out with Tysabri, but many people do. It is a good drug for MS. It has an 80% chance of stopping your relapses, and your new new active lesions while the other ones have 30-50% chances. It also has few side effects. It does however come with a big risk of developing PML if you are JCV positive, or are are or are on the drug a long time. Your physician will describe the risks to you. I am on it, and love it. I have been on it for one year and have had one relapse in one year.

Anyway, welcome to MS world, there is a Tysabri message board where you can ask all kinds of questions. Also ask and answer questions all over the boards, and don't forget our chat rooms. I wish you the best of luck with you new diagnosis.

Lisa
Moderation Team

[tspaulding]

have been waiting 5 years for dx, now dr are telling me it has gone to long with out treatment, so they don't feel a lot of the meds will work. They want me to start out with Tysabri, and I have some concerns about it. I have a lot to learn, and to understand!

I had ms symptoms at 16, frequent urination and left eye problems since I was 9. I had optic neuritis at 22, and was dx w/ RRMS in 1995. I went on copaxone in 99, when I had a job w/ ins and had a relapse of horrible balance that same year.

I would speak to your ms neuro again about meds and read about all of them before deciding. You are the patient, so the decision is yours, not the doctors.

i have been on gilenya for 2 yrs and use a cane at times, I am hoping for no wheelchair.

Good luck and please speak to your neuro again about meds before deciding

Tasha RRMS, age 39

[wendyjames2]

Welcome. I am fairly new to the forum. Just like you it ok the doctors years before they finally diagnosed me with MS. I had to do my own research and I had to know more about myself to help them to finally arrive at a diagnosis about a year ago. This forum is a good support group for us. I have been reading a lot since I joined and I'm learning.

[MimiOR]

This is my first MS site. RRMS since 8/2011.

Im feeling newly diagnosed since I have been in a firm state of denial for 2 years. LOL Anyways-

Hello, I am 37 yr old Wife of 18 years & mommy of our 3 year old little angel ;-)

My MS is "invisible" to others. I quietly deal with the symptoms at all costs. I take my Tecfidera (since 4/2013) & dont discuss this much at work although some staff do know. I was on Avonax for 1.5 years & it dam near ruined my life! I was soooo ill due to the side effects but was too afraid to quit it. I LOVE LOVE the Tecfidera! I feel like a new woman!

I am very stubburn. I have been too "strong" to reach out. LOL. Well after 2 years I have decided to stop being in denial. Ha Ha. I work full time as a government Accountant & was relocated 140 miles away from home 6 months ago due to budget cuts. Yes, I have been commuting because we cant afford for me to lose my job. This has been an eye opener for me. Having MS & then adding this level of stress has forced me to reach out. This is a good thing!

Well, I have finally landed a transfer back within a 50mile round trip to my home...YEAAA! Start date 10/7/13. Although its a lesser position I am ok with that. I do not share my DX unless I absolutely must. I value my privacy & hate ppl to feel sorry for me so with this, among other reasons I dont share much. Im so excited! More time with my family, less stress & WAY less of a commute/gas $ expenses. My vehicle was damaged 2x with this commute in 6 mo. More miles...more chances of problems ya know!
With this transfer My husband & I would love to try for a 2nd baby. I came to this site looking for info on when to stop taking my Tecfidera to begin trying to conceive. Anyone have any stories or personal info in regards to this subject by chance? I have a few appts coming up...Neuro/MRI & OBGYN (Mirena removal) all witin the next 3 weeks. Any info is greatly appreciated everyone!

[Kronk]

Welcome. I'm new here myself. Sorry it has taken a while to get your diagnosis. It's been 20+ years for me with a "possible" then a "probable" then a "most likely" set of tentative diagnoses along the way.

I had a few episodes followed by an MRI a year ago it showed 9 active lesions, as in contrast lighting up, 8 in the brain and 1 on the spine and i was listed as "probable" MS. I am on Copaxone but wondering what is up with the diagnoses? At what point does someone HAVE MS?