Got my dx today...

[jenid706]

Hi everyone,

I got my diagnosis of MS today from my neurologist. He wants to start me on Rebif as soon as possible. I am not sure how I feel yet. I am kind of numb right now. My husband is being supportive to a point but kind of treating it like I had a splinter and it isn't going to be a problem.

A little background on me: I am a 30 year old mother of 5 in my last year of obtaining my Bachelors' degree in Business Administration/ Accounting. I have a great family who is really being optimistic about the whole thing but it is bothering me more that they are thinking it is not a big deal because many people have had it and are doing fine.

They don't really want to know more about it. It kind of seems like they think now that I am diagnosed the whole thing is no longer a problem.

Sorry to ramble and complain, I feel like I am still in Limbo.

Thanks to all who read this

Jeni

[gomer]

Jeni........... I had similar feelings, even tho my situation was far different at Dx. The feeling of being lost at sea or thrown to the sharks. That was the spark that started Rest area 51/Newbies Lounge.

Good luck and for me anyway things did get a little easier. I expect you suffer from something like shell shock. For me it was no surprise.

Gomer Sir Falls-a-lot

[Echo2099]

Jeni,

Maybe your family is optimistic because, unlike some other diseases, MS is not a death sentence. Yes, MS can be serious and a serious pain in the arse, but it's not like having an inoperable brain tumor, or acute leukemia. We aren't dying. And maybe that is what your family was worried about all along. Maybe they imagined the worst, and feel relieved that it is not the worst.

Give them and yourself a little time to let this all soak in. Then when you are ready, talk with them. Maybe you can contact the local MS Society and all of you attend a meeting or an event. There are several pamphlets and newsletters available to help families talk about and deal with the how MS is effecting them.

As far as still being in limbo, I think we are all still pretty much in limbo. None of us know what or when some new symptom will be visiting us. We don't know what supplements, what meds, or what treatments will work for which person. Nor do we know how long they will work. We don't even know what the progression of our progression will be. Heck, I guess we don't know much of anything when it comes to our adventures with MS. As the song goes.... one day at time.

But I do know one thing for sure....

This forum is a great place to ask questions, find answers, meet kindred spirits, rant about your day, gather inspiration, and share a few laughs!

And although I'm sorry to hear you've have reached full citizenship in the world of MS, I'm glad you have joined us here at MS World. It's a mad, mad world, and we need all the help we can get!

[22cyclist]

Hi everyone,

I got my diagnosis of MS today from my neurologist. He wants to start me on Rebif as soon as possible. I am not sure how I feel yet. I am kind of numb right now. My husband is being supportive to a point but kind of treating it like I had a splinter and it isn't going to be a problem.

A little background on me: I am a 30 year old mother of 5 in my last year of obtaining my Bachelors' degree in Business Administration/ Accounting. I have a great family who is really being optimistic about the whole thing but it is bothering me more that they are thinking it is not a big deal because many people have had it and are doing fine.

They don't really want to know more about it. It kind of seems like they think now that I am diagnosed the whole thing is no longer a problem.

Sorry to ramble and complain, I feel like I am still in Limbo.

Thanks to all who read this

Jeni

Jeni:
Sorry you have to be welcomed to the club. It is sometimes hard for family to wrap their heads around the disease, both because it is relapsing remitting for most, and many symptoms are not outwardly presenting.

With Rebif, the medication you have chosen with hopefully much thought, you will have a nurse come out and give instructions on how to self-inject. My advice is to get your spouse involved right from the start.

They may need to help you with injections (say in the arms) from time to time in the beginning anyway.

Rebif also provides excellent, simple to understand booklets about MS, treatments for it, for you, family and friends, and treatment with Rebif. It is a non-bogged down version for people to get the gist in a very up front way that yes you are sick...and will be sick.

After 4 years I was finally able to get my grandmother, and mother to understand more about my MS through these booklets. They didn't listen to me, didn't read the books I gave them, but, the booklets worked. Simple, easy to read.

Be patient. Both with yourself, and your family. They are probably in shock too. You are entitled to feel sad. Come here and vent, find a local support group too in your area.

Hang in there, OK? It gets better...at least emotionally.

[alishape]

Hi Jeni

I believe this is the best place for rambling and complaining! You can kinda sort out your thoughts on a caring sounding board.

It seems like most of our loved ones don't really get it at first. Some of my friends and family treat me as though nothing is any different, others treat me like I've suddenly become more fragile. I know that they love me and wish the best for me so I try to be patient with them. I'm sure they say the same thing about me, .

Good luck to you. Remember, if you need to vent or ramble, this is the place!

[jbell2435]

Hi Jeni

Welcome to our corner of the world...but so sorry you had to join the club!

When I was first dx, my mom was with me and my daughters called that night to find out what the doc said, and then nothing...my mom still rarely talks about it although she does ask how I feel and has made many comments about how I am the bravest person she knows. I'm not sure about that one!

My husband was calling me a hypochondriac right before I was diagnosed, so when he hear the news, he was speechless (ha!), but very understanding.

I told him how important it was to me that he read the booklet the doctor gave me and he did. I wish that my mom and daughters had the same interest.

I don't know if they were/are just scared of what could be, or they just think it's no big deal??

I wish you luck, and as others have said, give it some time to sink in for everyone, but it can be a very emotional time in the beginning so you may want to bring it up now with the family that you will need their support and understanding to not feel so alone.

{{{{HUGS}}}}