You guys are so SMART!!

[LATW]

AFTER A SHORT NIGHT OF SLEEP WE GOT UP AND DROVE 3 HOURS ON UGLY SNOWY ROADS TO THE MS CLINIC.  WE CHECKED IN AND WENT TO THE EXAM ROOM.  I WAS SO AMAZED AT THE DIFFERENCE IN THE FACILITY COMPARED TO THE ONES I HAD BEEN IN PREVIOUSLY.  THE OTHER TWO WERE VERY MODERN AND UP TO DATE.  AND BOTH HAD AND INCREADIBLY LONG WAIT.

THE CLINIC I WENT TO TODAY WAS THE MOST HIGHLY RECOMMENED MS CLINIC IN INDIANA.  ALL THEY DO IS MS. THEY HAVE OVER 800 PATIENTS WITH MS.  

SO WE GET IN THE ROOM AND THE NURSE COMES IN AND TAKES INFORMATION. SHE LEAVES AND VERY SHORTLY AFTER THE DOCTOR COMES IN.  SHE IS VERY INTERESTED IN OUR 2 YEAR OLD SON WE BROUGHT WITH US. (HAD TO BECAUSE OUR OLDER DAUGHTER HAD THE FLU AND COULD NOT TAKE CARE OF HIM)  SHE SAID SHE HAD ALREADY GONE OVER ALL OF MY MRI'S AND OTHER TESTS AND FELT THAT I HAVE EARLY SIGNS OF MS.  SHE SAID SHE WAS GOING TO DO A PHYSICAL EXAM AND BASED ON THAT START ME, OR NOT, ON AVONEX.  

SHE DID THE EXAM AND STARTED TO EXPLAIN THAT FROM WHAT SHE AND HER PARTNER SAW, THE HEAD NEUROLOGIST CAME IN TO SEE ME TOO, THEY BOTH FELT I NEEDED TO BE STARTED ON TREATMENT NOW.  THERE IS ENOUGH EVIDENCE TO CONSIDER ME IN THE VERY EARLY STAGES OF MS.  THANK YOU GOD FOR AN ANSWER!!  

THESE WERE THE NICEST PEOPLE.  THE FIRST NEUROLOGIST I SAW TOLD ME THE AREA ON MY MRI WAS CAUSED BY HIGH BP.  THE SECOND NEUROLOGIST I SAW TOLD ME I NEEDED TO "TAKE SOME TIME FOR MYSELF" AND TOTALLY DISMISSED THE ON AND FLARE ON MY BRAIN MRI.  

THESE TWO MS DOCTORS JUST SHOOK THEIR HEADS IN AMAZMENT.  YOU WILL ALL BE HAPPY TO KNOW THAT THE INFORMATION YOU ARE GETTING ON SOME OF THESE MOST POPULAR MS BOARDS ARE RIGHT ON WITH WHAT I WAS TOLD TODAY.  

SO, I AM NO LONGER IN LIMBO.  I LEFT WITH ORDERS FOR A L-SPINE MRI, HAD MORE BLOOD DRAWN, MEDICATION (TRILEPTAL) FOR MY TRIGEMINAL NEURALGIA. THEY ARE WORKING ON GETTING INSURANCE APPROVAL FOR AVONEX.

SO, I AM NOT HAPPY ABOUT THIS DX BUT SO GLAD TO FINALLY HAVE AN ANSWER.  I HAD ACTUALLY GIVEN UP LONG BEFORE ON STARTED.  I WOULD GO TO THE DOCTOR WITH ODD SYMPTOMS AND NEVER GET ANY REASON FOR THEM.  ONLY THAT I WAS ANXIOUS.  WELL, YES, I WAS ANXIOUS.  YOU DO TEND TO BE ANXIOUS WHEN ODD THINGS ARE GOING ON.  

NOW I HAVE TO GET INTO OUR LOCAL MS DOCTOR NOW THAT I HAVE A DX HE CAN FOLLOW ME.  I WILL GO BACK TO THE MS CLINIC EVERY 3 MONTHS OR SO.  I NEED TO FIND A NEURO-OPTH AND GET BACK WITH MY PCP.  BUT RIGHT NOW I AM GOING TO GO REST.  I WAS WORRIED LAST NIGHT AND THE TN I HAVE RIGHT NOW KEPT ME AWAKE.  I AM HOPING THIS NEW MEDICATION WILL HELP.  

LA

[Rena705]

Well now is the time to let all of this information to sink in , deal with it and get on with what you have to do.  I am sorry to hear that you have a positive dx of MS and it will take some time to adjust to the fact that you have a diagnosis let along a diagnoses of MS!  

You will probably be best off to try to keep busy even though the "high' of diagnosis has worn off.  I would imagine that little Granddaughter of yours will appreciate the extra attention she will get now that you know where you stand.

If you have an MS Society near you, I would suggest calling them and either arranging to go to a support group meeting or they will send you an information package that is geared specifically to someone recently diagnosed and they are FULL of information. (we discussed this previously when you needed some info for your father remember?)

Most of all, take a deep breath and step back and just give yourself a chance to come down from the adrenalin high that is caused by anxiety, worry, anger, anticipation...you will come down and it will be hard but most of all..remember that we are here to pick you up again and put a smile back on your face ok?

Lots of Hugs,

Rena

[Momzilla]

I'M JUST SO RELIEVED FOR YOU!!!!

TAKE YOUR TIME LOOKING OVER EVERYTHING AND LETTING IT ALL SINK IN.

HUGS,

ZILLA*

[LATW]

THAT IS RIGHT!! :)  HONESTLY, I SAT AND LISTEN TO THE DOCTOR YESTERDAY AND IT WAS LIKE LISTENING TO ONE OF MY GOOD INTERNET FRIENDS WITH MS TALK!  
I UNDERSTOOD EVERYTHING SHE WAS TELLING ME.  I HAVE NOT LOOKED INTO THE MEDICATION THING YET. I WAS TOO AFRAID TO EXPLORE WHAT HAPPENED IF I WAS DX'S.  
NOW THAT I AM THERE I NEED TO GET OVER IT AND LOOK AT THE INFORMATION.

[Momzilla]

LA~

I'M HAPPY AND SAD.  JUST LIKE EVERYONE ELSE.  I KNOW YOU KNOW HOW TO TAKE THAT.  I'M SO GLAD YOU HAVE SOME ANSWER AND FINALLY SOME TREATMENT.  YEA!

AND YOU'RE ABSOLUTELY RIGHT,  WE ARE SO SMART, DAGNABBIT.  WE ROCK.

ZILLA*

[LATW]

I WENT TO BE BEFORE 10 LAST NIGHT. THAT IS A FIRST IN SOME TIME!  I AM GOING TO GO SEE MY GRAND DAUGHTER TODAY. SHE HAS ANOTHER DAY IN THE HOSPITAL.  I NEED TO GO DO THAT.

I AM NOT FEELING AS UP AS I WAS YESTERDAY. I NEED SOME TIME TO ABSORB WHAT IS GOIN ON.  I AM JUST A LITTLE WORRIED NOW ABOUT THE FUTURE.  BUT, I AM REALLY OK.  JUST RUNNING THINGS THROUGH MY MIND.  

I AM HAPPY TO HEAR RITA ALSO GOT AN ANSWER. OF COURSE OUR ANSWERS ARE NOT WHAT WE WANTED TO HEAR, BUT WE WHEN WE KNOW SOMETHING IS NOT RIGHT IT IS ALWAYS GOOD TO KNOW WHAT IS GOING ON.  

I THINK ONCE THOSE AROUND ME GET PAST THEIR SHOCK I WILL BE OK. MH DAUGHTERS ARE HANDLING IT OK. MY HUSBAND SEEMS TO BE FINE. IT IS MY PARENTS I WORRY ABOUT. :(  THEY KNOW. MY DAD WAS CLEARLY UPSET.  THE MS IS ON HIS SIDE. OF COURSE HE NATURALLY THINKS THAT IS WHERE IT CAME FROM. I NEED TO GET SOME INFORMATION TO HIM SO HE UNDERSTANDS MS DOES NOT HAPPEN THAT WAY.  

I WILL BE BETTER ONCE I KNOW THOSE AROUND ME ARE ALRIGHT!


LA

[Wobbly]

I'm really glad you are out of limbo land and can now get some treatment and have a direction.  Hope all goes well and take care.  Let us know how things are.

Andie

[young at heart]

I'M HAPPY ,BUT SAD IN THE SAME SENSE,IF THAT MAKES ANY SENSE AT ALL.

YOU HAVE JOINED THE RANKS OF MANY OF US.

PLEASE TAKE THE TIME TO ABSORB ALL THIS.

SEE WE TOLD YA THERES GOOD DRS OUT THERE.

GEEZ,KIDS CAUSING OPTICAL NEURITIS,I ALWAYS TELL THEM THEY ARE JUMPING ON MY LAST NERVE,THEY NEED TO PICK A NEW NERVE.(LOL)

GET SOME REST

T

[grannyhotwheels]

I'm very happy and very sad for you all at once.  Yes, it's wonderful that you finally know that you have MS but now comes the scary part.  YOU HAVE MS.  This is a very emotional time for you and if you want to cry go ahead.  I also know that you are filled with relief and we are filled with relief with you.  Now that we know lets kick this thing in the butt right from the start.  I am so glad that you went to this MS clinic.

For those that are in limbo land still, it might help some of them if you could give them the information of the clinic you went to and weather or not you had to have a referral to get there.  Another thing for those in wait is limbo land does not last forever.  There is light at the end of the tunnel.

I'll be praying,
Carol

[monotreme]

Craig and I are very happy for you!!!  As parents of six children, he has been told that too many kids must be making him crazy.  
I think the best thing this forum does is to empower  people to keep going to more doctors and search for answers.  It helps all of us to not give up.

Elaine and Craig

[Quixotic1]

I am so glad we helped you!  Thanks for the thanks!  It is truly what we live for.  And, no real surprise, you pretty much got your diagnosis.  He's just filling in the blanks right now.  How are you feeling about it?

Know we're always here.  You're no longer in Limbo but you have a huge new path in front of you.  There are going to be a lot of questions.

You can join Rita (Cosmobirdy). You had the same experience today.  A new neuro that put it all together and said what you both had expected to hear a long time ago.  Doesn't it feel good in a perverse way to be validated.  We never thought you were just stressed.  Nowhere does it list "children" as a cause for Optic Neuritis.  Sheeehs!

(((HUGS))) Quix

[mokibear]

So no longer a limbo lander, yeah! I am sorry for the diagnosis itself but now you can start dealing with what you know it is. I am so happy that you found someone who would listen to you and validate what you have been telling them. You give hope to the rest of us. Do get that much needed rest.

Hugs
Moki

[gollie]

First off  I am sorry to hear the ms dx but I can totally understand what a relief it must be to finally know what you are dealing with. All that time in limbo land can really mess with a persons head, and body and not many a docs out there have meds for limbo landers disease!  Im sure it must be a wonderful feeling to be able to finally be able to start getting proper treatment and meds for the proper dx. Im so happy for you, so you can now have some peace of mind , and know what your up against for sure now, and can now move forward to making informed and proper decisions about your health and meds and docs ect. I know it will still not be the easyist road but it makes a heck of a difference when you can see what your fighting against!!!!  
All My Best Gollie  

[Amyloo]

I am truly glad your visit was "conclusive".  (Especially with the long trip in the snow!)  I hope your DMD works for you, and you start to feel like you are getting a handle on things.  God bless you. Amy

PS to Erica:  If someone asks you if you are better and/or back to work, you say "no, we're still trying to figure things out."  And leave it at that.  It's only a conversation if two people are talking.  Love to you, Amy

[ELT]

   I am sooo jealous.  Sigh, not that I want it, but, I'm soo sick of ppl thinking I am crazy, or asking me if I'm better and back to work.  I appreciate their concern, but without a dx, what the heck do I continue to say?

   Glad you have answers, sorry for my rant. lol lol.  My brain works in mysterious ways.  


   Erica

[Heather3418]

YOU DID IT.....You are no longer "in the crazy" category!  You finally found the doctors that would actually listen.  I am not happy that you have MS, just happy that you found the right doctors and they are getting you strated on treatment.  I used Avonex for three years and only had two+ mild relapses.  It prevented any brain atrophy and kept me on top of my game.  It didnt' help with my MS symptoms, but it kept me stable for a long time.  I was stupid and went off of it after several years, now I have gone from 7 lesions to 12 in my brain, so once again, I am back on one of the DMD's.

Oh honey, I am so glad that you have your answer.  WE are going to be with you every step of the way through this...I hope you remember that.  No question is too stupid, no emotion too unusual...we are here to help and support you and that's exactly what you will get....

All of us send you our strength and our love,
Heather

[cjacks]

LA ,

Your post was so genuine. All over the place ?  Not at all.   What you had to say came across loud and clear in your enthusiasm.   Bravo !!!  

What great news ..  Thanks so much for sharing it .  Get some rest ....    now you are on another journey .  Good luck to you and the rest of your family

Jo

[Jazzyfizzle]

LA,

I am flooded with relief and happiness for you that you have escaped Limbo land and have found a doctor that listened to you and really looked at your medical evidence.
Not that of course, I want you to have the MonSter, but that you know it's name and can start fighting it.

I sure understood everything you were saying. :))


Jazzy

[LATW]

THANK YOU ALL!  


I read through what I wrote and saw I was all over the place. Sorry for the goofy post.  I am really tired but wanted to get something posted before I fall asleep!



This clinic was not up to date or fancy as far as the way it looked.  It smelled like stale smoke and the carpet needed to be cleaned.  

The bluilding is old and you would never guess it was a specialty clinic.

However, I have to say I got the best care I have ever recieved today. They were interested in me and got everything set up. I don't have to worry about anything.  I do have a couple of phone calls to make, but the rest of it was done by them.

They told me to call anytime I need and they will try and help.

The MRI is a T-spine not L spine.  

I am sure I confused people by saying I saw two doctors today and one thought the MRI showed high bp while the other told me to go home and rest.  

The first neurologist I saw this summer told me the lesion was from high bp.  The second one told me it was my children causing my problems and to go home and rest, walk, and go shopping by myself.  

The two doctors I saw today could not believe none of the doctors I saw this summer did anything more for me.  



Hope I did not confuse anyone too much.  I REALLY need a nap..........

[kitten o]

SORRY YOU HAVE MS. BUT NOW YOU NO.
LIKE I SAID BEFORE IT TOOK ME 4YRS TO
FIND OUT WHAT WAS WRONG.
LIMBO LAND IS OVER NOW 4 YOU.
GOOD LUCKAND FEEL BETTER
KITT
  .

[essdipity]

It's so great to hear this!! Being validated, taken seriously and treated is the most wonderful and important thing in the world. Please keep telling us all about things as they unfold.

ess

[Barbie51]

I am so glad that you finally found some Docs to give you some answers.  Limbos the worst.   I take Avonex and have had very good luck with it.  My husband and I were both trained in giving them, but now he does them all.  Bless him.  As long as I remember to take pain reliever with it, I'm okay.  I used to have to wake up and take it again after 6 hrs and during the day the next, but I usually don't need it anymore.  I have found this forum to be very right on also.  You take care and keep us informed.

Barb

[Super_sally888]

Hey LA!  

Wonderful wonderful news for you!
You give us limbo landers hope!
Now you are in control and have a clear direction and you know the MonSter you are fighting - that makes it so much easier.  What a wonderful team to be working with.

Sally