Advice : Good afternoon, my name is Luis... - My MSAA Community

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luiscorrea1962 profile image
8 Replies

Good afternoon, my name is Luis Correa and my younger daughter was diagnosed with MS on December 29th of 2016.

We live in Clearwater, Florida. My daughter's name is Stephanie and she is 21.

We would like to know if there is any center down here where we can go and learn more about this desease.

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luiscorrea1962 profile image
luiscorrea1962
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8 Replies
WAshingtongirl profile image
WAshingtongirl

luiscorrea1962 , I'm sorry your daughter has been diagnosed with MS, and also sorry her doctor didn't share more information on it or where you could learn more about it. I'm really kind of shocked about that, to tell you the truth. I'm sorry. He/she should have provided you with more than a diagnosis...

Our ambassadors Jesmcd2 or Fancy1959 can share the proper phone numbers for the MSAA and NMSS. (I'm sure they will post that for you soon.) From there, you can call and be directed to information and contacts in your area. It is also possible we have someone on the forum here who lives in your area in Florida.

Anytime you or Stephanie have a question, ask it. You can see from our posts that we discuss all aspects of MS. In addition to information, we also share laughter and encouragement as we share our lives with one another.

Keeping you all in prayer and hoping you get the answers you seek quickly.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply toWAshingtongirl

Thank you WAshingtongirl 😊

Jes🌠

Miriade profile image
Miriade

Hi Luis Correa. I live in South Florida. The name most Neurologist always recommended to me and also from MS Society is Dr Brian Steingo. He is very well known from all others He is specialized in MS. I went to his office also, it is in Sunrise. For you is direct drive. Another one I a going also in Boca Raton is Dr Brian Costell, also MS specialized. They are top MS specialist and Dr. Costell have trials in his office with new drugs.

erash profile image
erash

I see dr Stephen Rosenberg at the MS center in Orlando. He is wonderful but close to retirement and only working a few mornings per week.

Your daughter is very fortunate to have you advocating for her. Please have her consider checking in here as there is much experience, support and collective knowledge.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Hi luiscorrea1962 and Stephanie and welcome to the roller coaster ride of MS, that no one wants to be on.😞 ~hugs~. I know it's alot to take in. And everyone wants to throw everything at you at once or nothing at all. Either way, you still know nothing about this monster, they call MS 😕. I was dxed 1 1\2 yr ago and l still don't know anything.

What l do know is this. Family support is Most Important!!

Take each day as it comes for now my friend, it's OK to have any feelings your feeling! Even anger. We have all been there one way or another.

Have an awesome support group. Call the hospital and see if they have a local support group. And of course us 😊

And get ahold of the MSAA they can give you all kinds of material.

mymsaa.org

(800) 532-7667 ext. 154

You can also call nmss at 800 344-4867 and they will have resources also.

And of course we are here also. We don't have Dr degrees or anything like that but we do have is heart. 💝. We know what it's like to live with it. We know what our caregivers think. That's what this place is.😊 Somewhere safe to talk about pretty much anything and everything.(and vent) when needed.

Feel free to jump in and ask anything 😊

Jes🌠

RoyceNewton profile image
RoyceNewton

G'day, I am Royce from Phoenix AZ. Not really your neck of the woods but may I give u too much advice that u can ignore?

1 get your daughter on one of the ms tablets yesterday if not sooner, waiting is a REALLY BAD idea, I take Tecfidera 1 tablet twice a day honestly no biggie.

2 I am sure she has cried and u have held her, remember there is no time limit to crying I still do it randomly after 18 or 19 years, I try not to remember which.

3 Start writing everything down and keep records of EVWEYTHING, it will give her something to concentrate on and writing is Very very therapeutic, though proof reading I feel is overrated:-)

4. Carry on change your dreams and be wary of what you hear & read. If there was a cure we would all be in line and somebody might be really rich. Always remember that before u open your wallet.

5. ENJOY DINNER and maybe drink less, do not give up on life it may just have turned out differently to what she expected.

Good luck to you from what my Mum tells me it is hard on parents, google MSAA, NMSA and the international MS association, welcome to your new world of abbreviations. Last but not least have a sense of humor & remember Neuros are weird people ASK questions, DEMAND if u have to answers that u understand.

Sorry for babbling, I do that. Hope she has a reasonably gentle 2017 Royce

RoyceNewton profile image
RoyceNewton

Sorry me Again I never shutup :-) Philosophy statement here. STOP and think twice when she or u or anybody says something, "O POOR U , HOW DID U GET IT" etc u will hear them over the years, let them flow off u, it is real hard, still is but do NOT let anybody pigeon hole u into something that u r not. Always be true to who u are not what somebody else wants u to be. Remember now is a good time to get it if u have to get it, I had 1 medicine choice back when I started & I HATE needles, she has tablets now. Safe Journey Royce

agapepilgrim profile image
agapepilgrim

RoyceNewton I like your advice, I enjoy your ramblings, I am a triangle so no one will ever fit me in a hole, doesn't sound like anyone did you either!

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