Aa
Hi! New Here
Hey y'all! I thought I would join here and talk to others living with MS also. I was diagnosed in 2001 and have been in a pretty bad relapse lately.
I have changed neuro's and he questioned the MS diagnosis since my MRI hasn't really changed in the last 6 years. I don't know what else could cause bulbar optic neuritis, weakness, unstable gait to where I have to use at least a cane, painful spasticity and numbness from my toes to my waist. He decided to check me for Leber's Heriditary Optic Neuropathy and yes that may explain the vision problems but not all this other stuff. Still waiting on those results.
But they have decided to put me in an experimental drug program for Fingolimod. I can't take the interferons and Copaxone is out of my budget and don't qualify for assistance.
If you have any questions just ask. I'm pretty much an open book.
Thanks for allowing me to join your group.
Nonnie
I have changed neuro's and he questioned the MS diagnosis since my MRI hasn't really changed in the last 6 years. I don't know what else could cause bulbar optic neuritis, weakness, unstable gait to where I have to use at least a cane, painful spasticity and numbness from my toes to my waist. He decided to check me for Leber's Heriditary Optic Neuropathy and yes that may explain the vision problems but not all this other stuff. Still waiting on those results.
But they have decided to put me in an experimental drug program for Fingolimod. I can't take the interferons and Copaxone is out of my budget and don't qualify for assistance.
If you have any questions just ask. I'm pretty much an open book.
Thanks for allowing me to join your group.
Nonnie
WELCOME TO OUR CYBER FAMILY,THIS IS AN AWESOME GROUP HERE,GLAD YOU HAVE JOINED US.
WE ARE A VERY LAID BACK GROUP,WE SHARE ARE TEARS,OUR ICE CREAM AND WE HAVE A WEEKLY FRIDAY NIGHT WEENIE(DEFECTIVE NEURO'S)ROAST.
I HAVE READ A LITTLE ON THE STUDY YOU ARE IN,BLESS YOUR HEART AS IT OPENS THE DOOR FOR SO MANY OF US.
I'M ON REBIF,RUMOR IS LATE FALL THERE IS TO BE PILL FORM YEA!!!!!!!!! NOT FOND OF THE SHOTS.
I HAVE SPMS,BUT THE REBIF IS KEEPING THE MRI'S STABLE,BUT REMISSIONS ARE FARTHER APART.BUT LIFE GOES ON.
I THINK MANY OF US HERE HAVE BEEN RELAPSING,I DONE A 5 DAY STENT OF SOLU-MEDROL THE 5 DAYS BEFORE CHRISTMAS AND AFTER AN EMERGENCY VISIT TO THE MS ER THE OTHER NIGHT MY MS SPECIALIST RAN 1500 MGS OF SOLU-MEDROL IN 15 MINUTES HOPING TO SHOCK MY SYSTEM.OH. I WAS SHOCKED ALL RIGHT.
ARE YA MARRIED,DO YA HAVE KIDS,PETS.DO YA HAVE SPECIAL INTEREST AND SO FORTH.(I'M NOT NOSIE).WE ALL WOULD LIKE TO GET TO KNOW YA.
I HAVE HEARD OF SO MANY THAT HAVE SWITCHED NEURO'S AND FOR THE NEW NEURO SAY HEY---THIS MAY NOT BE MS.THATS A BLESSING THAT THE MRI DIDN'T CHANGE,THAT SHOULD OF RANG A BELL TO THE NEW NEURO THAT YOUR MS AS LESION WISE IS STABLE.
FLAIR-UPS CAN OCCUR WITH A STABLE MRI,A SIMPLE COLD CAN BRING OUT THE WORST.
I CAN RELATE TO THE ON,I'M RECOVERING FROM BILATERIAL ON,RARE!!!!
WE A HAVE A RETIRED PEDIATRICIAN WITH MS, HER NAME IS QUIX AND SHE IS OUR RESIDENTIAL DEN MOTHER AND A WEALTH OF INFORMATION.I DON'T KNOW HOW SHE RETAINS IT ALL,SHE'LL BE BY TO GIVE YOU AN OPENED ARMED WELCOME.
WE ALSO HAVE HEATHER,WHOM HAS A WEALTH OF INFO ON MS,SHE IS OUT OF TOWN AT THIS TIME SHE'LL BE BACK TO WELCOME YOU ALSO.
NONNIE YOU HAVE JUST GAINED ONE OF THE LARGEST CYBER FAMIES A PERSON COULD EVER WANT.
THANK YOU FOR ALLOWING US TO BECOME PART OF YOUR FAMILY.BEST WISHES ON THE PENDING RESULTS OF THE NEW TESTING.
SENDING YOU A SLICE OF DAIRY QUEEN ICE CREAM CAKE,OH,ITS GOOD!!!!!!!!!
T-LYNN
WE ARE A VERY LAID BACK GROUP,WE SHARE ARE TEARS,OUR ICE CREAM AND WE HAVE A WEEKLY FRIDAY NIGHT WEENIE(DEFECTIVE NEURO'S)ROAST.
I HAVE READ A LITTLE ON THE STUDY YOU ARE IN,BLESS YOUR HEART AS IT OPENS THE DOOR FOR SO MANY OF US.
I'M ON REBIF,RUMOR IS LATE FALL THERE IS TO BE PILL FORM YEA!!!!!!!!! NOT FOND OF THE SHOTS.
I HAVE SPMS,BUT THE REBIF IS KEEPING THE MRI'S STABLE,BUT REMISSIONS ARE FARTHER APART.BUT LIFE GOES ON.
I THINK MANY OF US HERE HAVE BEEN RELAPSING,I DONE A 5 DAY STENT OF SOLU-MEDROL THE 5 DAYS BEFORE CHRISTMAS AND AFTER AN EMERGENCY VISIT TO THE MS ER THE OTHER NIGHT MY MS SPECIALIST RAN 1500 MGS OF SOLU-MEDROL IN 15 MINUTES HOPING TO SHOCK MY SYSTEM.OH. I WAS SHOCKED ALL RIGHT.
ARE YA MARRIED,DO YA HAVE KIDS,PETS.DO YA HAVE SPECIAL INTEREST AND SO FORTH.(I'M NOT NOSIE).WE ALL WOULD LIKE TO GET TO KNOW YA.
I HAVE HEARD OF SO MANY THAT HAVE SWITCHED NEURO'S AND FOR THE NEW NEURO SAY HEY---THIS MAY NOT BE MS.THATS A BLESSING THAT THE MRI DIDN'T CHANGE,THAT SHOULD OF RANG A BELL TO THE NEW NEURO THAT YOUR MS AS LESION WISE IS STABLE.
FLAIR-UPS CAN OCCUR WITH A STABLE MRI,A SIMPLE COLD CAN BRING OUT THE WORST.
I CAN RELATE TO THE ON,I'M RECOVERING FROM BILATERIAL ON,RARE!!!!
WE A HAVE A RETIRED PEDIATRICIAN WITH MS, HER NAME IS QUIX AND SHE IS OUR RESIDENTIAL DEN MOTHER AND A WEALTH OF INFORMATION.I DON'T KNOW HOW SHE RETAINS IT ALL,SHE'LL BE BY TO GIVE YOU AN OPENED ARMED WELCOME.
WE ALSO HAVE HEATHER,WHOM HAS A WEALTH OF INFO ON MS,SHE IS OUT OF TOWN AT THIS TIME SHE'LL BE BACK TO WELCOME YOU ALSO.
NONNIE YOU HAVE JUST GAINED ONE OF THE LARGEST CYBER FAMIES A PERSON COULD EVER WANT.
THANK YOU FOR ALLOWING US TO BECOME PART OF YOUR FAMILY.BEST WISHES ON THE PENDING RESULTS OF THE NEW TESTING.
SENDING YOU A SLICE OF DAIRY QUEEN ICE CREAM CAKE,OH,ITS GOOD!!!!!!!!!
T-LYNN
Welcome! How wonderful that you found us, and especially nice for us!
Sorry about your diagnosis, which you seem to have accepted well. Wish your doctor would, right? It seems to be a very difficult time right now for so many of our MSers with relapses and flares. Sorry it's that way for you, too.
The trial sounds interesting. I am sure others besides Kitt would love to hear about it, too. I know I would!
Thanks for sharing your story and we hope you stick around. It's a wonderful corner of the world here, where everyone can come and complain, moan, send a hug and make each other laugh.
Take care and feel better!
Zilla*
Sorry about your diagnosis, which you seem to have accepted well. Wish your doctor would, right? It seems to be a very difficult time right now for so many of our MSers with relapses and flares. Sorry it's that way for you, too.
The trial sounds interesting. I am sure others besides Kitt would love to hear about it, too. I know I would!
Thanks for sharing your story and we hope you stick around. It's a wonderful corner of the world here, where everyone can come and complain, moan, send a hug and make each other laugh.
Take care and feel better!
Zilla*
WELCOME.
WE HAVE A GREAT PEOPLE HERE.
I WAS DX IN MAY 2007, I HAD BAD RACTION TO COPAXONE
AND I TAKE NO MEDS. ONLY FOR PAIN AND WHEN NEEDED
STEROIDS FOR MY ON. I WOULD LIKE TO
NO ALITTLE ABOUT THAT DRUG YOU ARE TAKING?
WELCOME AGAIN
I AM DOING WELL. THANK GOD
KITT
WE HAVE A GREAT PEOPLE HERE.
I WAS DX IN MAY 2007, I HAD BAD RACTION TO COPAXONE
AND I TAKE NO MEDS. ONLY FOR PAIN AND WHEN NEEDED
STEROIDS FOR MY ON. I WOULD LIKE TO
NO ALITTLE ABOUT THAT DRUG YOU ARE TAKING?
WELCOME AGAIN
I AM DOING WELL. THANK GOD
KITT
Hi cz, yes I've been a member of MSWorld for several years. I agree it is a great site but I like to go to different sites and meet others. Maybe I'll see you in MSWorld sometime, I post from time to time.
Thanks,
Nonnie
Thanks,
Nonnie
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