QUALIFIED FOR A STUDY--T4 MRI'S

[young at heart]

SORRY FOR BEING MISSING IN ACTION.

TO ALL THE NEW MEMBERS A BIG WELCOME,LOOKING FORWARD TO MEETING ALL OF YOU SOON.

I HAVE BEEN SO STINKIN BUSY,BETWEEN THE APARTMENT,TRYING TO KEEP UP THE YARD AT THE HOUSE AND I HAVE STARTED SHOPPING FOR FURNITURE AND SO FORTH.

BY THE TIME I GET MY DAY IN,I'M TO PHYSICALLY,EMOTIONALLY AND MENTALLY DRAINED TO POST.HOWEVER I DO READ MANY OF THE POST AND MAY REPLY TO ONE OR TWO.

NOW FOR THE STUDY, MY NEUROMUSCULAR DOC (DR.K)OUT OF THE CLEVELAND CLINIC WANTED ME TO HAVE NEW MRI'S, WELL WITH MY INSURANCE,I HAVE TO HAVE MY GP ORDER THEM,I TOLD HIM I REFUSED UNLESS THEY WERE ON A T3.MY GP IS USUALLY AGREEABLE ON MOST THINGS I THROW AT HIM.

I SUGGESTED THE WHOLE SPINE AND BRAIN,WITH THE MS AND THE ADHESIVE ARACHNOIDITIS,HE AGREED.WHEN HE CALLED THE TEACHING HOSPITAL(MY RESEARCH AND SUGGESTION) ,THEY TOLD HIM THEY HAVE A NEW T4 MRI MACHINE AND THEY USE IT NOW FOR JUST STUDIES,BUT BEINGS I HAVE THE CHRONIC BILATERAL ADHESIVE ARACHNOIDITIS,I QUALIFIED. YEA-YEA !!!! THIS MRI,SHOULD ALLOW THE NEURO RADIOLOGIST TO SEE WHAT NERVES IN THE LUMBAR ARE DAMAGED.

AFTER EXPLAINING TO THE NEURORADIOLOGIST,THE DIAGNOSIS OF THE MS,WITH THE ABSENT LESIONS BUT THE BRAIN ATROPHY AND SPINAL ATROPHY HE HAS DECIDED ON MONDAY TO TAKE A FEW BRAIN AND C-SPINE PICTURES ON THE T4.

I HAD THE BRAIN AND C-SPINE ON THE T3 ON FRIDAY,BUT THE THORACIC AND LUMBAR ON MONDAY,IT'LL TAKE ABOUT 2 HOURS.BUT ANXIOUS TO SEE WHAT POPS UP.

THE RADIOLOGIST ASK ME WHEN THEY WERE DOING THE BRAIN MRI IF I EXPERIENCED ANY ABNORMAL SENSATIONS,AN ODD QUESTION,I TOLD HIM YES,DURING ONE PART MY RIGHT EAR GOT ITS FUNKY BUZZYING SENSATION BACK,HARD TO DESCRIBE AND MY BRAIN ON THE RIGHT SIDE FELT LIKE IT WAS VIBRATING.

DON'T EVER BE AFRAID TO RESEARCH WHATS AVAILABLE IN YOUR AREA AND ASKING YOUR GP IF THESE TEST ARE AVAILABLE.IN THIS CASE IT WAS WELL WORTH ASKING.MANY TEACHING HOSPITALS HAVE ON GOING STUDIES AND BEING PART OF THAT STUDY,USUALLY YOU DON'T HAVE TO PAY FOR IT.

I'M TRYING NOT TO OVER DO, TAKING TIME TO REST WHEN POSSIBLE.I HAVE DAYS I'D PREFER TO STAY IN BED,BUT THAT HASN'T HAPPENED MUCH. I HAVE HAD A GREAT DIFFICULT IN WALKING,THEY LEGS ARE GIVING ME A FIT AGAIN.MY VISION IS STILL WONKY,BUT GONNA RIDE THIS ONE OUT THIS TIME.NEURO WANTED TO RUN SOLU-MEDROL AGAIN,BUT I HAVE DECLINED.THE OPTICAL NEURITIS HAS HUNG AROUND FOR QUITE A WHILE AND THE STEROIDS SEEM TO ONLY BE A TEMPORARY FIX.

THEY SEEM TO HAVE THE PAIN UNDER CONTROL AT THIS TIME.

ONCE  THINGS SETTLE DOWN , BACK IN THE HOUSE,SHOULD BE MID-JUNE, I'LL HAVE MORE TIME TO CONTRIBUTE TO THE FORUMS.

YOUR ALL IN MY THOUGHTS AND PRAYERS.

T-LYNN

[denise61]

TO:  T-LINN,

WAY COOLLLLLLL !!

SO HAPPY FOR YOU!  I WANT T DO IT!!!  TOO!

THANKS FOR THE EXTRA PUSH!

[Heather3418]

I am so anxious to here more about the 4T and it's resolution.  I can't wait for you to post the pictures from your MRI.  I would think it would be most interesting.

Glad to hear that the house is moving along.  I know that you will be anxious to get settled again.  I have been praying for you.  Sounds like the prayers have been heard and you are on your way, in more ways than one.

Keep us posted sweetheart.  Have a GREAT DAY!

Heather

[floridamom2]

I AM SO GLAD YOU QUALIFIED FOR THIS STUDY!!!!!  YOU DESERVE THE BEST OF EVERYTHING - EVEN MRI MACHINES!!

I AM ALSO HAPPY YOUR CONTRACTOR IS MAKING YOU A PRIORITY.  IT IS TIMES LIKE THESE THAT RESTORE OUR FAITH IN PEOPLE.  

GLAD YOUR PAIN IS UNDER CONTROL.  YOU TAKE IT EASY NOW AND DON'T OVER DO ANYTHING!!  I KNOW EASIER SAID THAN DONE WHEN YOUR PLATE IS OVERFLOWING BUT DO IT FOR US!!

LOOKING FORWARD TO SEEING WHAT YOUR MRI SAYS SO BE SURE AND LET US KNOW.  

LOVE AND BIG CYBER HUGS!
kRISTIN

[young at heart]

SL,

THANKS,

THE CONTRACTOR IS DOING AN AWESOME JOB, AND MY INSURANCE HAS TAKEN GOOD CARE OF US.

I CAN HONESTLY SAY I'M TIRED OF SHOPPING, DONE A LOT OF ONLINE SHOPPING LAST NIGHT FOR THE KIDS.

GOTTA STOP TODAY TO GET THEIR COMPUTER AND LABTOPS.PLUS GOTTA GET THE TV'S.

MY LEGS HATE ME FOR SHOPPING.

MY NEURO HAS DONE THE COCKTAIL MIXING OF THE SPASMATIC MEDS FOR 3 YEARS NOW,I HAVE REFUSED A SPINAL CORD STIMULATOR AND A PAIN PUMP.JUST NOT TO THAT POINT YET.

NOT LOOKING FORWARD TO LAYING FLAT FOR 2 HOURS THIS AFTERNOON,BUT THE MACHINE IS PADDED.

THEIR ARE MANY GOOD PEOPLE IN THIS WORLD,I HAVE MET MANY SINCE THE HOUSE FIRE.

JUST WANNA GET BACK IN MY HOUSE,GET THE MS AND AA UNDER CONTROL AND TAKE TIME TO RELAX (LOL).

T-LYNN

[sllowe]

GOOD LUCK W/THE REST OF THE TESTING TODAY "T"

DID THE CONTRACTOR HOOK YOUR HOUSE UP SO FAR AS HE SAID HE WOULD?

I TOLD THAT STORY TO SOMEONE HERE AT HOME, TO MAKE THEM BELIEVE THAT THERE ARE STILL GOOD PEOPLE IN THE WORLD, MADE THEIR DAY AS IT MADE MINE.  

I'M EXCITED FOR YOU GIRL!  LIKE YOU SAID, KNOWING THE DIFFERENCE BETWEEN WHAT ISSUE IS CAUSING WHAT SYMPTOM WILL BE VERY HELPFUL TO YOUR FUTURE CARE - ESPECIALLY WHERE COCKTAIL MIXIN IS CONCERNED!

ALL THE BEST TO YOU,
-SL

[young at heart]

MIKE,

WELCOME TO OUR CIBER FAMILY.

I'M HOPING THE T4 STUDY HAS MUCH TO OFFER MANY.

I WISH MORE DRS. , NEURO'S AND GP'S WOULD OFFER PATIENTS MORE OPTIONS THAN DISMISSING PATIENTS OR JUST TREATING SYMPTOMS.

MANY FACILITIES HAVE T3 MRI'S.


QUIX,

I'M HOPING THAT THE T4 GIVES THE NEURORADIOLOGIST MORE INSIGHT.

THE T4 MRI WAS GREAT,LESS NOISE,THE MACHINE WAS COMPLETELY PADDED AND AFTER AN HOUR THEY HAD 800 PLUS 1MM PICTURES.

I HAD VIBRATION SENSATIONS IN THE RIGHT SIDE OF MY HEAD DURING ONE PART AND THE EAR STARTING BUZZING,WHICH IS ANNOYING.

TOMORROW THE STUDY WILL BE ABOUT 2 HOURS.THORACIC AND LUMBAR.THE LUMBAR WILL BE INTERESTING.HOPING IT WILL GIVE THEM THE ANSWERS TO WHAT NERVES ARE DAMAGED IN THE LUMBAR SPINE.

THE LUMBAR WILL BE A SLOWER STUDY DO TO THE STEEL ROD AND SCREWS.

MAYBE THIS STUDY WILL EXPLAIN TO NEURO'S THAT THE T1.5 MACHINE IS NOT ALWAYS THE ANSWER AND WHAT MAY NOT SHOW UP ON A T 1.5 WILL ON A T3 OR HIGHER.

I WILL TELL THE KIDS YOU SAID HI.

THE HOUSE SHOULD BE DONE MID-JUNE.MY CONTRACTOR HAS HAD A FULL CREW WORKING.HE HAS BEEN AT THE APARTMENT AND REALIZED I HAVE DIFFICULTY WITH THE SPACE AND GETTING THROUGH THE DOOR WAYS.

I WILL KEEP EVERYONE POSTED ON THE T4 MRI'S AND WILL POST THE PICTURES ONCE I HAVE THE CD'S.

T-LYNN

[Quixotic1]

HEY, KIDDO!  GREAT TO HEAR THIS NEWS.  I WAS JUST READING SOME STUFF ABOUT 4T MRIs.  THEY DO PROMISE TO GIVE US IMPROVED RESOLUTION TO SEE LESIONS THAT WERE OTHERWISE INVISIBLE - ESPECIALLY ON THE 1.5T MACHINES AND LOWER!

I WONDER IF THEY ASKED YOU IF YOU FELT ANYTHING, BECAUSE THEY ARE WONDERING IF THE HIGHER MAGNETIC FIELDS CAN SOMETIMES ACTUALLY BE FELT BY PEOPLE.

IT WOULD BE FABULOUS IF THIS STUDY AND THE IMPROVED IMAGES COULD HELP SOME WAY WITH YOUR PROBLEMS.  WE ARE ALL ROOTING FOR YOU!

SAY "HI" TO THE KIDS FOR US.  ARE YOU STILL LOOKING AT FALL FOR MOVING BACK INTO THE HOUSE?

QUIX

[michael1028]

My name is Mike. I have read you posts with great interest. I am new to the group and about two  and a half years into my journey. I can appreciate the team concept. More involved the more answers.
   Good luck to you, I will watch with interest for your T4 MRI's.
thoughts and prayers your way,
Mike  

[young at heart]

THANK YOU FOR YOUR KIND WORDS.

ITS TAKEN ALONG TIME TO LEARN MY LIMITS, I'M REALLY INDEPENDENT,MY 2 DISEASES ARE MAKING ME LEARN MY LIMITS (LOL)

MANY TEACHING HOSPITALS ARE DOING STUDIES,THE NET IS FULL OF INFORMATION.

I HAVE A FANTASTIC GP THATS WILLING TO READ THE RESEARCH I TAKE TO HIM.WE DISCUSS IT AND USUALLY WILLING TO GO WITH IT.

KATHY YOU WILL LEARN TO BE YOUR OWN ADVOCATE,ITS A PROCESS AND BEING WITH THE SAME GP OR NEURO HELPS.

YOU AND YOUR DRS. NEED TO WORK AS A TEAM ,SOMETIMES WE MUST ASK OUR DRS. TO WORK WITH AS A TEAM.

ONCE I GET A CD OF THE T4 MRI'S I WILL POST THEM

THANKS FOR THE GOOD THOUGHTS

T-LYNN

[Fluffysmom]

I have to say Wow! about the T4, also!

I'm very impressed by your positive attitude, your compassion for others, and your drive to accomplish all that is within your power to accomplish.  I love how you researched your options and spoke up; I try to do that, but you sound like an expert in advocating for yourself!  And you know your limits; know when to take it easy and take care of yourself.

I'm looking forward to your future posts.  I am eager to see what T4 pics look like!

Sending good thoughts your way,

Kathy

[young at heart]

ELAINE,

YES, MY CALVES DID THE SAME AS CRAIGS,NOW THEY HAVE GOTTEN REAL THIN.THE ONLY THING THAT KEEPS ME UP RIGHT ARE THE LEG BRACES.

I HAVE SIGNIFICANT ATROPHY IN THE RIGHT THIGH,NOT FROM LACK OF USE,ITS FROM THE MUSCLE WEAKNESS.BETWEEN THE MS AND THE AA ITS KICKING THE HEY-DEY OUT OF MY RIGHT LEG.

THE FULL LENGTH RIGHT LEG BRACE HAS HELPED A GREAT DEAL,ADDS MUCH NEEDED SUPPORT AND REDUCES THE MUSCLE SPASMS.

ELAINE, I TAKE A COCKTAIL OF ANTI-SPASMATIC MEDS WHICH ARE A GREAT HELP.BASICALLY CALLED POLY-PHARMACING--BACLOFEN-ZANAFLEX --4 X A DAY AND VALIUM IN BETWEEN AS A BOOSTER.

THE BACK OF MY THIGHS GET EXTREME SHARP PAINS AND THE ELECTRICAL SHOCKS ARE ENOUGH TO PUT YA THROUGH THE ROOF.

MY HEART BRAKES FOR CRAIG-- HE NEEDS HELP FOR THE SPACTICITY BEFORE HIS LEGS BEGIN TO ATROPHY.I'LL BE PRAYING THAT THE NEW PHYSIO CAN HELP.

I SKIPPED THE PHYSIO AND SEE A REHABILATION DR.

ALASTRIA,

WELCOME TO OUR CYBER FAMILY,I HAVE MISSED SO MANY NEWCOMERS.

THE T4'S ARE USED FOR STUDIES RIGHT NOW.I'M GRATEFUL THE RADIOLOGIST ARE GONNA DO A FEW ON THE BRAIN AND C-SPINE,HE'S JUST GONNA THROW THEM IN.

ADHESIVE ARACHNOIDITIS,IS WHERE THE NERVES GLUE THEMSELVES TOGETHER,NO CURE,NO SURGERY WILL HELP.MINE IS FROM PREVIOUS BACK SURGERIES.MYELOGRAMS--FROM WHEN THEY USED THE OIL DYES.

THE T4 SHOULD BE ABLE TO DEFINE THE NERVES AND THE EXTENT OF THE DAMAGE.A NERVE CONDUCTION STUDY CAN ONLY TELL SO MUCH.

YES I CAN GET A CD OF THE FILMS,I WILL POST THEM ONCE I RECEIVE THEM.

MOKI,

I AM SO READY TO GET BACK IN MY HOUSE, TWO PLACES IS KICKING MY REAR AND I STILL HAVE SO MUCH TO DO.

MY SHED KIT IS SITTING IN MY GARAGE, AND NO,NO AND NO, I WILL NOT BE ASSEMBLING IT.I HAVE FOUND A LIMIT. OR SHOULD I SAY I HAVE LEARNED MY LIMITS. OKAY I'M HARD HEADED !!!!!

THE T4 I'M ANXIOUS TO COMPARE THE MRI'S TO THE T1.5. I'M PRAYING THEY CAN TELL ME WHAT NERVES ARE DAMAGED IN THE LUMBAR.THIS IS IMPORTANT TO ME.EVEN THOUGH IT CAN'T BE REVERSED.

I'M GRATEFUL TO BE PART OF THE STUDY, IT WAS BY A FLUKE THAT I QUALIFIED.AND VERY THANKFUL THE RADIOLOGIST IS CURIOUS ON THE BIZARE MS DIAGNOSIS.

I'M BLESSED FOR A GREAT GP AND THAT THIS HOSPITAL HAS THE T4 MACHINE,ITS A SMALL TEACHING FACILITY.

ALWAYS THINKING OF YOU.

WILL KEEP YOU POSTED AND WILL POST THE T1.5 MRI PICS AND THE T4'S WHEN I RECEIVE THEM.

T-LYNN

[mokibear]

HI T,

I WILL BE GLAD WHEN YOU CAN GET INTO THE HOUSE AND THINGS CAN GET BACK TO NORMAL FOR YOU. YOU NEED SOME REST MY FRIEND. THIS HAS BEEN TOO HARD ON YOU.

WOW A T4 MACHINE, HOW COOL. BE SURE TO LET US KNOW HOW IT GOES.

ALWAYS THINKING OF YOU T.
HUGS
MOKI

[alastria]

Wow T4 Cool!!!  I'm new to this forum, but am very interested to hear about what they see with this.  I've read about T4 machines but have not seen the images.  Can you get your own copies?  

I hope this brings some clarity to your issues.  I have read about arachnoiditis but don't know much about it.  I'm sure it is hard to clearly visualize on MRI.  

Good luck!  I hope those 2 hours in the tube just fly right by.

[monotreme]

T-LYNN,
   THANKS FOR ASKING ABOUT CRAIG.  HE IS HAVING ALOT OF SPASTICITY.  IT IS PREVENTING HIM FROM WALKING MORE THAN A BLOCK.  HE HAS HYPERTONICITY AND HIS CALVES ARE GETTING HUGE.  DID THAT HAPPEN TO YOU??

    THE SPASTICITY HURTS IN THE CALVES, THE OUTSIDE OF BOTH THIGHS GET SHARP PAINS WHEN HE STANDS, AND THE BALLS OF HIS FEET GET ELECTRIC SHOCKS.

   SINCE THE CRUMMY PHYSIATRIST IN DE  DID NOT WANT TO WORK WITH OUR INSURANCE TO HELP CRAIG CONTINUE PT, I AM TAKING HIM TO A PHYSIATRIST AT A REHAB CENTER IN PHILADELPHIA NEXT WEEK..   I AM HOPING HE CAN HELP.

   UNIVERSITY OF MARYLAND MS NEURO IS WAITING FOR HIM TO GET  A NEW BRAIN MRI BUT IT IS ONLY A 1.5 TESLA.  

   THANKS FOR YOUR THOUGHTS AND PRAYERS T.  THEY ARE ALWAYS APPRECIATED.  YOU ARE IN OURS ALSO.

ELAINE

[young at heart]

ELAINE,

HOWS CRAIG DOING? HOW ARE HIS LEGS ? HOPING HE'S DOING BETTER.

I THOUGHT OF HIM YESTERDAY AFTER GETTING ALL THE INFO ON THE T4 MRI AND HOW THE TEST ARE GONNA BE RAN.

THEY TOLD ME WITH THE T4,THEY WILL BE ABLE TO SEE WHAT NERVES ARE CLUMPED TOGETHER AND WHAT NERVES ARE PLASTERED TO  THE SPINAL CANAL.

THE REPORT WILL STATE WHICH NERVES ARE DAMAGED AND WHERE THEY GO TO AS IN RELATIONSHIP TO BODY PARTS.

THE AA ISN'T CURABLE NOR EVEN FIXABLE,BUT I'LL KNOW IN RELATION TO WHATS THE AA SYMPTOMS AND WHATS MS SYMPTOMS.

CRAIG WAS ON MY MIND DO TO THE SPOT ON HIS SPINE WHICH REALLY WASN'T EXPLAINED.I WHOLE HEARTEDLY CAN RELATE TO HIS FRUSTRATION WITH HIS LEGS.MINE HIT THE FLOOR EVERY MORNING WITH PROTEST.

I'M ALSO INTERESTED IN THE COMPARISON BETWEEN THE BRAIN AND C-SPINE ON THE T3 AND T4.

MY WISHES ARE THAT MORE PEOPLE COULD HAVE ACCESS TO THE HIGHER TELSA MRI'S VERSUS THE T 1.5.

ELAINE,I ALWAYS LOVE READING YOUR POST.TELL CRAIG I'M PRAYING FOR HIM

T-LYNN

[monotreme]

GLAD TO HEAR FROM YOU T.   PLEASE LET US KNOW WHEN THE MRI REPORTS COME IN.  I AM REAL INTERESTED IN SEEING IF THE HIGHER TESLA MACHINES PICKED UP ANYTHING.

PLEASE TAKE CARE OF YOURSELF.  YOU SOUND VERY BUSY.  I ALWAYS ENJOY HEARING FROM YOU.

ELAINE