HOWDY,
I HAVE BEEN ON THIS WEBSITE FOR APPROXIMATELY 3 MONTHS NOW. SOME OF YOU I HAVE GOTTEN TO KNOW IN THE CHAT ROOMS, OTHER NOT YET.
I CAME ON HEAR AFTER SCHEDULING MY HUSBAND (EX-HUSBAND) TO SEE A NEW NEUROLOGIST. I SAY EX HUSBAND BECAUSE I DIVORCED HIM IN 2000. HE WAS DX IN 2003 BUT I DID NOT FIND OUT UNTIL 2006, WHEN HE HAD OUR CHILDREN FOR VISITATION. I RECEIVED A CALL FROM OUR YOUNGEST SON TELLING US THAT DAD FELL OVER AND WAS UNCONSCIOUS. I RUSHED OVER AFTER CALLED 911 AND THANK GOD HE WAS OK. HE SPILLED ABOUT HIS MS, OPTIC NUERITIS AND WITHIN A YEAR I HAD MOVED HIM BACK IN WITH US SO I COULD CARE FOR HIM BETTER.
WE WERE VERY EXCITED TO GET IN WITH THE NEW DOCTOR AS THE PREVIOUS DOCTOR REFUSED TO TREAT HIM FOR HIS MS. THE PREVIOUS DOCTOR FELT IT WAS BEST TO ADOPT A WAIT AND SEE ATTITUDE. WELL AFTER 8 YEARS OF RELAPSES AND NO TREATMENT I INSISTED ON A NEW DOC...
HIS MOST RECENT MRI SHOWED A 90% INCREASE IN LESIONS AND THEY WERE NOW ON HIS SPINE AS WELL. HIS MS HAS CAUSED "BLACK HOLES" IN HIS BRAIN WHERE THE BRAIN TISSUE IS SIMPLY GONE. NON-TREATMENT HAS ALSO CAUSED THE MS TO KICK INTO HIGH GEAR AND LITERALLY "SHRUNK" HIS BRAIN. NEEDLESS TO SAY HE IS SCARED AND I AM ANGRY... BUT EVERY CLOUD HAS ITS SILVER LINING AND BECAUSE OF HIS RELAPSES AND THE OTHER HE QUALIFIES FOR A DRUG TRIAL HERE IN ARIZONA. BECAUSE HE IS VOLUNTEERING EVERYTHING WILL BE PAID FOR BY THE TRIAL. I WASN'T SO SURE ABOUT IT BUT HE FELT IF HE COULD HELP SOMEONE ELSE IT WAS WORTH A SHOT.
SO, NOW, HERE WE ARE 2 MRI'S LATER AND LOTS OF BLOOD WORK AND HE WILL BE STARTING A NEW DRUG TRIAL ON MONDAY. I CANT SAY I AM NOT APPREHENSIVE ABOUT THIS AS I GREW UP WITH A SEVERELY DISABLED TWIN. I KNOW WHAT DRUGS, AND HOSPITALS CAN DO TO A PERSON. BUT I AM TRYING TO KEEP MY HEAD ON STRAIGHT.
HE WILL BE IN A BLIND TRIAL WHERE HE WILL BE GETTING AVONEX OR DACLIZUMAB. REGARDLESS HE WILL GET MEDICAL TREATMENT. DACLIZUMAB IS A DRUG PREVIOUSLY USED FOR ORGAN TRANSPLANT PATIENTS. IT HAS BEEN USED TO PREVENT REJECTION AFTER TRANSPLANTS. DOCTORS ALSO BEGAN TO NOTICE THAT IS HELPS SLOW DOWN THE PROGRESSION OF MS FOR THOSE WITH PPMS. OUR DOCTOR HAS HIGH HOPES FOR THIS MEDICATION. IT IS A ONCE A MONTH INJECTION. SO WE WILL BE DOING WEEKLY INJECTIONS AT HOME AND GOING TO HOPE RESEARCH EVERY 4 WEEKS FOR THE OTHER INJECTION.
I JUST WANTED TO SAY THAT THIS FORUM AND CHAT ROOM HAS BEEN SO HELPFUL AND SUPPORTIVE. I HAVE HAD ONE OR TWO MINOR BREAKDOWNS OVER THE LAST 3 MONTHS AND CANNOT BEGIN TO SAY HOW THANKFUL I AM FOR THIS SITE AND ITS MEMBERS.
I WROTE IN ALL CAPS FOR THOSE WHO CANNOT SEE AS WELL, AND I WRITE THIS TO MAYBE LET OTHERS GET TO KNOW ME A BIT BETTER TOO.
THANK YOU, THANK YOU, THANK YOU, FOR BEING HERE.
MARY
I HAVE BEEN ON THIS WEBSITE FOR APPROXIMATELY 3 MONTHS NOW. SOME OF YOU I HAVE GOTTEN TO KNOW IN THE CHAT ROOMS, OTHER NOT YET.
I CAME ON HEAR AFTER SCHEDULING MY HUSBAND (EX-HUSBAND) TO SEE A NEW NEUROLOGIST. I SAY EX HUSBAND BECAUSE I DIVORCED HIM IN 2000. HE WAS DX IN 2003 BUT I DID NOT FIND OUT UNTIL 2006, WHEN HE HAD OUR CHILDREN FOR VISITATION. I RECEIVED A CALL FROM OUR YOUNGEST SON TELLING US THAT DAD FELL OVER AND WAS UNCONSCIOUS. I RUSHED OVER AFTER CALLED 911 AND THANK GOD HE WAS OK. HE SPILLED ABOUT HIS MS, OPTIC NUERITIS AND WITHIN A YEAR I HAD MOVED HIM BACK IN WITH US SO I COULD CARE FOR HIM BETTER.
WE WERE VERY EXCITED TO GET IN WITH THE NEW DOCTOR AS THE PREVIOUS DOCTOR REFUSED TO TREAT HIM FOR HIS MS. THE PREVIOUS DOCTOR FELT IT WAS BEST TO ADOPT A WAIT AND SEE ATTITUDE. WELL AFTER 8 YEARS OF RELAPSES AND NO TREATMENT I INSISTED ON A NEW DOC...
HIS MOST RECENT MRI SHOWED A 90% INCREASE IN LESIONS AND THEY WERE NOW ON HIS SPINE AS WELL. HIS MS HAS CAUSED "BLACK HOLES" IN HIS BRAIN WHERE THE BRAIN TISSUE IS SIMPLY GONE. NON-TREATMENT HAS ALSO CAUSED THE MS TO KICK INTO HIGH GEAR AND LITERALLY "SHRUNK" HIS BRAIN. NEEDLESS TO SAY HE IS SCARED AND I AM ANGRY... BUT EVERY CLOUD HAS ITS SILVER LINING AND BECAUSE OF HIS RELAPSES AND THE OTHER HE QUALIFIES FOR A DRUG TRIAL HERE IN ARIZONA. BECAUSE HE IS VOLUNTEERING EVERYTHING WILL BE PAID FOR BY THE TRIAL. I WASN'T SO SURE ABOUT IT BUT HE FELT IF HE COULD HELP SOMEONE ELSE IT WAS WORTH A SHOT.
SO, NOW, HERE WE ARE 2 MRI'S LATER AND LOTS OF BLOOD WORK AND HE WILL BE STARTING A NEW DRUG TRIAL ON MONDAY. I CANT SAY I AM NOT APPREHENSIVE ABOUT THIS AS I GREW UP WITH A SEVERELY DISABLED TWIN. I KNOW WHAT DRUGS, AND HOSPITALS CAN DO TO A PERSON. BUT I AM TRYING TO KEEP MY HEAD ON STRAIGHT.
HE WILL BE IN A BLIND TRIAL WHERE HE WILL BE GETTING AVONEX OR DACLIZUMAB. REGARDLESS HE WILL GET MEDICAL TREATMENT. DACLIZUMAB IS A DRUG PREVIOUSLY USED FOR ORGAN TRANSPLANT PATIENTS. IT HAS BEEN USED TO PREVENT REJECTION AFTER TRANSPLANTS. DOCTORS ALSO BEGAN TO NOTICE THAT IS HELPS SLOW DOWN THE PROGRESSION OF MS FOR THOSE WITH PPMS. OUR DOCTOR HAS HIGH HOPES FOR THIS MEDICATION. IT IS A ONCE A MONTH INJECTION. SO WE WILL BE DOING WEEKLY INJECTIONS AT HOME AND GOING TO HOPE RESEARCH EVERY 4 WEEKS FOR THE OTHER INJECTION.
I JUST WANTED TO SAY THAT THIS FORUM AND CHAT ROOM HAS BEEN SO HELPFUL AND SUPPORTIVE. I HAVE HAD ONE OR TWO MINOR BREAKDOWNS OVER THE LAST 3 MONTHS AND CANNOT BEGIN TO SAY HOW THANKFUL I AM FOR THIS SITE AND ITS MEMBERS.
I WROTE IN ALL CAPS FOR THOSE WHO CANNOT SEE AS WELL, AND I WRITE THIS TO MAYBE LET OTHERS GET TO KNOW ME A BIT BETTER TOO.
THANK YOU, THANK YOU, THANK YOU, FOR BEING HERE.
MARY
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