NTK's Journal

OK GUYS N GALS GRAB A SEAT MAKE SURE U HAVE UR SODA'S, POPCORN N GUGEEFRIUTS THIS MAY BE A LONG ONE...

OK SO I HAD MY MRI DONE ON JUNE 30TH, 2008

HERE R MY RESULTS......

16 LESIONS IN ALL SO NO CHANGE THERE WITHIN THE PAST 3 YEARS N ALL 16 R NON-ACTIVE WOOHOOO GREAT NEWS. HOWEVER HE THINKS THEIR MAY BE ONE ACTIVE LESION IN MY SPINE BUT NOT SURE. DOESN'T THINK I NEED 2 HAVE AN MRI OF MY SPINE DONE AS YET. WILL WAIT UNTIL NEXT CHECK UP ON SEPT. 24TH, 2008 N C IF THERE R ANY CHANGES.

HAD MY VISIT WITH MY GENERAL DOCTOR ON JULY 17TH, 2008

N HERE IS HOW THAT WENT....

TOLD HER ABOUT THE HEARING LOSS IN MY RIGHT HEAR, SO SHE CHECK FROM MY CHEST 2 MY THROAT 2 MY NOSE N THEN MY EARS COME UP WITH NOTHING. SHE FELT THAT THE HEARING LOSS MAY BE FROM THE MS. SHE THEN CHECK MY SPINE N SAID IT WAS VERY INFLAMED HAD ALOT OF INFLAMATION N FELT I SHOULD BE PUT ON ORAL STERIODS AT THAT POINT. I TOLD HER I HAVE MY NEURO APPT THE FOLLOWING WEEK, SO SHE DECIDE 2 WRITE A REPORT 2 MY NEURO DOCTOR N LET HIM DECIDE THEN. I DON'T LIKE TAKING THE ORAL STERIODS, GET VERY BAD SIDE AFFECTS FROM THEM. I DID ASK HER ABOUT GETTING SOMETHING 4 THE PAIN IN MY SPINE BECUASE IT WAS SO BAD. SHE GAVE ME LIDOCANE PATCHES.

OK NOW ONTO MY NEURO APPT. ON JULY 24TH, 2008

N HERE IS HOW IT WENT......

HE CHECKED ME OUT N I TOLD HIM ABOUT THE HEARING LOSS N WE SPOKE ABOUT WHAT MY GENERAL DOCTOR HAD 2 SAY. HE SAID FIRST HE WANTED ME 2 HAVE A HEARING TEST DONE SO WE CAN SEE WHATS GOING ON THERE. HE ALSO TOLD ME THAT HE FELT THAT LDN WAS NOT WORKING 4 ME, I ASKED HIM HOW IS HE COMING 2 THIS DECISION, HIS ANSWER WAS THAT I HAD 2 FLAIR UPS SINCE BEING ON IT (NOT EXSACERBATIONS). I TOLD HIM IF THATS HOW U R MAKING THAT DECISON THEN LETS GO BACK FURTHER WHEN I WAS ON COPAOXNE N AVONEX I HAD FLAIR UPS ON THOSE AS WELL N WHEN I HAD 2 HAVE THE STERIOD INFUSIONS THEN IT WAS A TOTAL OF 5 DAY TREATMENT N THEN ORAL. THESE PAST 2 FLAIR UPS WERE TREATED WITH JUST 3 DAY TREATMENTS N NO ORAL. HE THEN TOLD ME THAT HE DOES NOT REALLY KNOW THE MACANICS ON HOW LDN WORKS 4 SOME N NOT OTHERS N THAT MOST OF HIS PATIENTS HAVE ASKED 2 BE TAKEN OFF. WE THEN TALK ABOUT MY BIGEST PROBLEM WITH MY MS N THAT WOULD BE THE INFLAMTION I GET IN MY SPINE MY RIG CAGE (MS HUG) N MY FINGERS ON MY LEFT HAND. SO TALKED SOME MORE N DECIDED 2 KEEP ME ON THE LDN N ADD A ONCE A MONTH IV STERIOD INFUION IN HOPES OF THAT KEEPING MY INFLAMTION AT BAY, TIME WILL TELL. I ALSO TOLD HIM THAT I FELT THAT THE BACOLFEN WOULD WORK ON SOME NITES BUT NOT ON OTHERS. I THINK WHEN I GET THE MS HUG REALLY BAD IT DOES NOT WORK AT NITE SO HAVE TROUBLE SLEEPING. SO WE HAVE ADDED ZANAFLEX 2MG AT NITE WHEN NEEDED N STILL CAN TAKE THE BACLOFEN DURING THE DAY WHEN NEEDED.

OK NOW ON 2 MY ENT APPT. ON JULY 29TH, 2008

HERE IS HOW THAT WENT....

THE DOCTOR ALREADY KNOWS ABOUT MY MS, GO THERE 4 MY ALLERGIES. HE SAID HE WAS AMASED THAT I HAVE NOT BEEN THERE IN SOME TIME N HAD ASKED HOW MY ALLERGIES HAVE BEEN. I TOLD HIM ABOUT BEING ON LDN N THINK THAT IT IS ALSO HELPING WITH MY ALLEGIES N HAVE HEARD IT HAS HELP OTHERS WITH THEIRS AS WELL. HE TOLD ME HE WAS GOING 2 DO SOME RESEARCH ON LDN. HE THEN CHECKED OUT MY EARS DID NOTICE SOME WAX DEEP IN THE EAR SO HAD THEM CLEANED OUT. THEN ONTO THE HEARING TEST. AFTER THAT WAS DONE BOTH DOCTORS CAME INTO THE ROOM N MY FIRST IMPRESSION WAS O NO. BUT IT WAS THE TOTAL OPOSITE. THEY TOLD ME ALOT OF PPL WHO WITH MS NOT ONLY HAVE TROBLE WITH THEIR EYES ON SOME LEVEL BUT ALSO HAVE TROUBLE WITH THEIR HEARING ON SOME LEVEL AS WELL. THEY COULD NOT BELIEVE HOW GOOD MY HEARING WAS I COULD HEAR A PIN DROP. WE THEN TALKED SOME MORE ABOUT THE SYMPTOMS I AM HAVING N THEY THINK BUT CAN'T BE SURE UNTIL THEY SEE IT WITH THEIR OWN EYES THAT IT CAN BE FROM THE INFLMATION. HE WANTS ME 2 CALL THEM THE NEXT TIME I GET THIS HEARING LOSS N WILL REDO THE TESTING THAT DAY.

HAD MY FIRST MONTHLY IV STERIOD INFUION DONE YESTERDAY JULY 30TH, 2008. WENT WELL NO SIDE EFFECTS FIRST NITE. TOOK SOME BENADRYL 2 GET A GOOD NITE SLEEP N IT WORKED.

SO AS OF 2DAY I AM STILL GOING 2 TAKE MY LDN. LDN IS NOT HELPING WITH ALL OF MY SYMPTOMS,BUT HERE IS WHERE IT HAS HELPED ME. IT HAS CLEARED UP THE FUZZY IN MY HEAD. HAS CLEARED UP MY BLADDER ISSUES AT NITE. N EVEN THO I STILL HAVE 2 USE MY SCOOTER OR MOTORIZE CHAIR 4 DISTANCE I DO WALK THE SHORT DISTANCE BETTER THEN I HAD A YEAR AGO. THERE IS A NEW MED THAT IS GOING 2 BE RELEASED IN 09 OR 10, THEY R TRYING 2 PUSH 4 09. ITS CALLED FAMPRIDINE THIS DRUG IS IN TRAIL N HAS SHOWN GREAT PROMISE IN HELPING WITH SPAUMS N NERVE PAIN N WILL HELP WITH THE INFLAMATIONS THAT THE SPAUMS N NERVE PAIN CAN CAUSE. MY DOCTOR HAS PUT ME ON THE LIST 2 BE 1 OF THE FIRST 2 START TAKING THIS WHEN IT COMES OUT. SO I WILL BE ADDING THIS ALONG SIDE MY LDN THINK THEY WILL MAKE A GOOD COMBO 4 ME.

I AM A REALALIST WHEN IT COMES 2 MY MS. I KNOW THEIR IS NO CURE OR WILL BE ONE 4 QUITE SOME TIME.  BIT I AM DESTINE 2 LIVE A NORMAL LIFE AS BEST I CAN SO WILL RESEARCH ALL DRUGS OUT THERE N AM WILLING 2 GO THROUGHT TRIAL N ERROR UNTIL I GET THE RIGHT COMBO OF DRUGS THAT WILL ALLOW ME 2 LIVE THAT NORMAL LIFE.

I HAVE STATED PT AT HOME 3 DAYS A WEEK, I HAVE A HOME HEALTH AID THAT COMES 2 DAYS A WEEK 2 HELP ME AROUND THE HOUSE. I HAVE MY INFUION NURSE THAT WILL BE HERE ONCE A MONTH N NOW MY PRIVATE NURSE THAT WILL BE DOING THE FOLLOW UP AFTER MY INFUIONS. SO U SEE I HAVE A GREAT TEAM THAT IS WORKING WITH ME 2 MAKE SURE I LIVE AS NORMAL A LIFE AS I POSSIBLE CAN....