To treat ON or not?

[LATW]

I called my PCP office and asked them about IV steroids. I told them I know it can cause a rise in blood pressure. I said I already have high bp.  They left a note for the doctor saying that my blood pressure is running high. They called back and said the doctor wants you to take your bp readings and let him know what they are and then he will decide to treat or not.

I hung up the phone and thought, what did that mean. Did he want to see if my bp was ok and then go for the steroids, or did the silly nurse mistake what I was saying.  I called back and YEP! The silly nurse thought I meant my bp is running high right now. I corrected her and told her that was not what I was asking.

I hate this!!!

By the way, is there any way to make the print bigger when you are responding to a message?  I know how to make the print larger for reading, but when I respond it is too small and hard to see. I have to really strain my eyes to respond.

L

[LATW]

THANKS, IT DOES HELP. I THINK THE THING THAT IS BOTHERING ME THE MOST WITH THIS IS I READ THAT IV STEROIDS MIGHT HELP KEEP MS AT BAY FOR A WHILE.

BUT THIS IS NOW MY SECOND BOUT OF ON WITH NO TREATMENT. I FEEL I MIGHT BE HEADING TOWARDS A DX SOONER THAN LATER. :(


L

[Quixotic1]

There was a huge study done a few years ago about whether to treat ON with steroids or not and whther it had any effect on preserving the vision.  These are the findings.

The use of IV steroids in high doses does tend to shorten the flair up of optic neuritis.  When compared to NO treatment at at, the use of steroids allowed for shorter bouts of optic neuritis, but had NO EFFECT on the ultimate preservation of sight.  The two were the same.  But, the IV steroids gave more relief.

However - the use of oral steroids was detrimental to the patient.  Patients who received oral steroids had more numerous bouts of ON.  In the end, though, there was no difference in the preservation of sight long term.

Summary - no treatment or steroids in either form did NOT effect the ultimate vision.

Oral steroids were associated with more bouts of ON.

I hope this helps.

Quix

[LATW]

THANK SO MUCH. MY PCP IS THE ONE WHO RECOMMENED THE MS DOCTOR I WILL BE SEEING. HE HAS TWO PATIENTS GONIG TO THIS DOC. ALREADY. SO IT SOUNDS LIKE THERE IS A GOOD RELATIONSHIP THERE. THAT HELPS ME A LOT! I HAVE BEEN WITH MY PCP FOR MORE THAN 15 YEARS. THAT HELPS. HE KNOWS I AM NOT NUT! :)

I HAVE ONLY SEEN TWO NEUROLOGISTS SO FAR. I WOULD REALLY LOVE IT IF I COULD GO TO THIS NEW ONE AND GET AN ANSWER. THE GOOD THING IS I HAVE HEARD REALLY GOOD THINGS ABOUT THIS MS CLINIC.

ONE LADY SAW THE SAME NEURO I SAW THIS SUMMER. SHE WAS NOT HAPPY WITH THE NEURO AT ALL AND DECIDED TO GO TO THE DOCTOR I WILL BE SEEING IN 3 WEEKS. SHE SAID SHE IS SO HAPPY WITH THE NEW NEURO. THAT GIVES ME A LOT OF HOPE.

I HAVE AN MRI THAT IS NOT NORMAL AND TWO BOUTS OF OPTIC NEURITIS. I AM HOPING IT IS NOT GOING TO TAKE A LOT MORE TO GET SOMEONES ATTENTION. I DON'T WANT TO LOSE MY EYE SIGHT.

THANK YOU FOR THE IDEA FOR BP MEDS. THAT HELPS ME SO MUCH!  IT TAKES THE FEAR I HAVE HAD OF STERIODS DOWN A FEW LEVELS.

L

[gooddays]

I AM GLAD THAT YOU HAVE BETTER INSURANCE COVERAGE NOW WHEN YOU NEED IT MOST.  I ALSO LIVE IN A RURAL AREA, BUT MS IS A BIG THING HERE IN PUERTO RICO BECAUSE THERE IS A BIG NUMBER OF PEOPLE WHO HAVE BEEN DXD, ARE POSSIBLE MS OR ARE JUST IN LIMBO LAND.  THERE IS ALSO A STUDY BEING CONDUCTED BY THE MED SCHOOL HERE BECAUSE MS IS NOT SUPPOSED TO STRIKE SUCH A BIG NUMBER OF PEOPLE IN THE TROPICS.  HOPEFULLY WE WOULD HAVE AN ANSWER AS TO WHY THIS IS HAPPENING TO SO MANY PEOPLE IN OUR SMALL ISLAND.

MY NEURO IS ABOUT 45 MINUTES AWAY FROM WHERE I LIVE AND MY PCP IS JUST A PHONE CALL AWAY.  MY PCP AND I WENT TO SCHOOL TOGETHER UNTIL WE WENT OFF TO COLLEGE, WE CONSIDERED EACH OTHER AS PART OF OUR FAMILIES.  HE WAS THE FIRST WHO SUSPECTED MS BECAUSE OF MY SYMPTOMS.  HE WAS ALSO THE FIRST ONE WHO HAD ME TREATED WITH A 5 DAY COURSE OF STEROIDS TO TREAT A ON TO PREVENT MY LEFT EYE FROM LOOSING ITS VISION FOR EVER.  HE WAS ALSO THE ONE WHO INCREASED MY HBP MEDICATION WHILE ON STEROIDS.

MY NEURO AND HIM HAVE NEVER MET PERSONALLY, BUT WHEN I FIRST VISITED MY NEURO OFFICE, AFTER SEEING 5 NEUROS, WHO TOLD ME THAT IT WAS ALL IN MY HEAD, SHE TOLD ME THAT THE ONLY ONE WHO DID A GOOD TREATMENT COURSE WAS MY PCP.  AS LONG AS YOUR TWO DOCTORS CAN COMMUNICATE BY E-MAIL, PHONE, FAX OR ANY OTHER MEAN OF COMMUNICATION AND NOT FEEL THREATEN BY EACH OTHER, YOU SHOULD BE IN GOOD HANDS.  IF I WERE YOU, I WOULD GIVE IT A CHANCE.

FEEL FREE TO ASK ANYTHING THAT YOU MAY THINK THAT I CAN HELP YOU WITH.  REMEMBER WE ARE JUST A MESSAGE AWAY!!!!!!

GOD BLESS YOU AND YOUR FAMILY,

G

[LATW]

THANK YOU! I HAD NEVER THOUGHT ABOUT BEING ABLE TO INCREASE ME BP MEDS WHILE ON STERIODS. AS FRUSTRATED AS I HAVE BEEN ABOUT NOT GETTING TREATMENT, I HAVE BEEN EQUALLY AS FRUSTRATED BY THE FEAR I FEEL OF THE SIDE EFFECTS.

I DON'T WANT TO HAVE A STROKE OR SOMETHING AWFUL HAPPEN. THE EYE PROBLEM IS BAD ENOUGH. I AM NOT SURE WHO CAN ADMIT AND WHO CAN'T HERE IN THE US.  I DO NEED MY PCP TO BE VERY INVOLVED IN THIS WHOLE THING. THE NEURO I WILL BE SEEING IS 3 HOURS AWAY. MY PCP IS ABOUT 3 MINUTES FROM ME IN HEAVY TRAFFIC.

I CAN MAKE IT IN ONE MINUTE IF THE ONLY TWO TRAFFIC LIGHTS IN TOWN STAY GREEN!  WE ARE IN A RURAL AREA AND I AM SURE THAT HAS A LOT TO DO WITH THE LACK OF TREATMENT IN MY CASE. THE OTHER PROBLEM I HAD WAS NOT HAVING A GOOD INSURANCE COMPANY.

OUR INSURANCE CHANGED THE FIRST OF THIS YEAR TO A BETTER PLAN. SO NOW I FEEL LIKE I CAN GET THE INFORMATION I NEED TO FIGURE OUT WHAT IS GOING ON.  

IT SOUNDS LIKE YOU HAVE A GOOD TEAM IN PLACE FOR YOU CARE. THAT IS REALLY GOOD!

L

[gooddays]

HELLO AGAIN

I AM SORRY THAT YOU HAVE ANOTHER BOUT OF ON, I KNOW THE FEELING.  I ALSO HAVE HBP AND I HAVE HAD A CONSIDERED NUMBER OF STEROIDS TREATMENTS AND WHAT MY DOCTORS DO IS THEY PRESCRIBE A HIGHER DOSAGE OF MY HBP MEDICATION BUT INSTEAD OF HAVING IT ONCE A DAY, I TAKE IT TWICE A DAY.  I, THANK GOD, I HAVE NEVER HAD PROBLEMS WITH  MY BLOOD PRESSURE GOING UP WHILE ON STEROIDS TREATMENT.

I HAVE BEEN TREATED FOR ON ON SEVERAL OCCASIONS WITH STEROIDS AND UNTIL LAST DECEMBER HAVE HAD RECOVERED MY VISION AND MY BP HAS BEEN OK:

TALK TO THE DOCTOR THAT WANTS YOU TO HAVE THE STEROIDS; REMEMBER;YOUR PCP NEEDS YOUR NEURO AND VICE VERSA:  OR LEAST IN PUERTO RICO A NEURO CANNOT ADMIT A PATIENT IN A HOSPITAL; SO HE/SHE NEEDS THE HELP OF PCP, WHO IN MY CASE WORK HAND IN HAND.

I HOPE YOU GET TREATED SOON.

GOOD LUCK WITH YOUR TREAT AND HOPE YOUR VISION IMPROVES AS SOON AS POSSIBLE.

GOODDAYS

[young at heart]

I HAD A DIFFICULT TIME AT FIRST WITH THE CAPS.

IT SURE MAKES READING EASIER.

I HOPE THEY GET YOU SOME TREATMENT FOR THE ON SOON.

T

[LATW]

I AM WORKING ON TRYING TO GET TREATMENT. I GO FOR A MRI NEXT WEEK. I CALLED THE MS CLINIC I AM SCHEDUALED TO SEE ON FEB 13TH AND THEY SAID THEY WOULD NOT TREAT ME BECAUSE THEY HAVE NOT SEEN ME YET. BUT IF I WERE A PATIENT OF THEIR THEY WOULD HAVE ME ON IV RIGHT NOW. THIS WHOLE SITUATION BOTHERS ME.

TYPING IN CAPS IS GOING TO TAKE SOME GETTING USED TOO! I KEEP WANTING TO HIT THE SHIFT BUTTON FOR CAPITAL LETTERS!

L

[young at heart]

RIGHTING IN CAPS HELP WITH VISUAL LOSS WITH ON.

SOLU-MEDROL HELPS WITH ON,THE MAJORITY OF THE TIME.THIS BOUT OF ON MY MORONIC NEURO TRIED TO HELP WITH ORAL STEROIDS BEFORE THE SOLU-MEDROL.

THE SOLU-MEDROL REDUCES THE INFLAMATION----ORAL STEROIDS CAN CAUSE ON TO REOCCUR AND HAS NO HELPFUL VALUES IN REGARDS TO ON.

SOLU-MEDROL CAN EFFECT ALL OF US DIFFERENTLY.CAN MAKE YA MOODY,EMOTIONAL,MEANER THAN A JUNK YARD DOG,CAN RAISE BLOOD PRESSURE AND SUGAR LEVELS.

YOUR DARN DRS SHOULD OF TREATED THE ON.


T

[LATW]

HELLO, I WAS JUST THINKING HOW ODD IT IS THAT TO HAVE TO FIGHT TO GET SOMETHING DONE WHEN MY VISION IS GOING.

I HAVE TO HAVE AN MRI DONE AGAIN.  I GUESS AFTER THAT THEY WILL DO TREATMENT.  

L

[Momzilla]

HI, AGAIN~

I DON'T KNOW HOW EFFECTIVE STEROIDS ARE, BUT I THINK IF MY DOC WAS OFFERING TREATMENT, I'D GIVE IT A GO.  I KNOW THE SIDE EFFECTS ARE PRETTY MISERABLE.  BUT, LIKE YOU SAID, YOU ARE TRYOING TO COMBAT LONG-TERM DAMAGE.  

I HAVE TO SAY, I DON'T KNOW WHAT THE LONG-TER,M BENEFITS OF STEROIDS ARE.  BUT A DOCTOR IS FINALLY OFFERING TREATMENT.  IF IT WERE ME, I'D GIVE IT A TRY, TO SEE WHAT A DIFFERENCE IT MAKES.

BUT READ UP AND SEE WHAT BENEFITS IT OFFERS IN THE LONG RUN.  I THINK I HAVE READ THAT IT MAY PROLONG A DX OF MS.....I MAY BE WRONG.  YOU HAVE BEEN SUFFERING SYMPTOMS A LONG TIME.  ASK YOUR DOC THE BENEFITS.

LET US KNOW WHAT YOU DECIDE.  (I'D LOVE A DOC TO OFFER ME MEDS!)

GOOD LUCK, LA,

ZILLA*

[LATW]

CAPS! THANKS FOR THE IDEA, NOW I CAN SEE WHAT I AM WRITING! AS LONG AS NO ONE THINKS I AM YELLING AT THEM.


I HAVE HIGH BLOOD PRESSURE AND I AM WORRIED THE STEROIDS WILL MAKE IT WORSE.

I DO FEEL BETTER THIS TIME AROUND THAN LAST. HOWEVER MY VISION IS WORSE THIS TIME THAN IT WAS LAST. TWO OF MY DOCTORS MENTIONED TREATMENT BUT NO ONE IS WILLING TO FOLLOW THROUGH.

I DO NOT WANT THE SIDE EFFECTS OF THE STEROIDS BUT I AM REALLY WORRIED ABOUT LOSING MY VISION.

L

[MCBCON]

I had those IV steroids.  I layed in bed for a couple days crying.  They made me so emotional.  I will not do that again.

[Momzilla]

TRY USING CAPS, LA.  I'M SORRY YOUR DOCTOR'S OFFICE IS NOT UNDERSTANDING.

WHY ARE YOU HESITANT TO TRY THE COURSE OF STEROIDS?  I KNOW YOU SAID THAT YOU WERE FEELING PRETTY WELL COMPARED TO OTHER TIMES; IS THAT CORRECT?

ZILLA*