Aa
Just walked in the door....saying hi (long post...sorry)
HELLO, ALL-
I AM NEW TO THIS COMMUNITY BUT NOT TO MS. I HAVE HAD NEUROLOGICAL PROBLEMS NOW FOR 5 YEARS. MY FIRST "EPISODE" WAS DIAGNOSED AS A MINI STROKE. LIFE WENT ON FOR 11 MONTHS AND THEN I WAS HIT AGAIN. THIS TIME I WAS IN THE HOSPITAL OVERNIGHT AND HAD X-RAYS, MRI, BLOOD WORK, LP AND WAS GIVEN A POSSIBLE MS DIAGNOSIS. OVER THE NEXT COUPLE OF MONTHS I LOST EVERYTHING DUE TO MY ILLNESS: JOB, VEHICLE, HOME, SELF-CONFIDENCE. I HAD MORE TESTING DONE - REPEAT MRI'S AND LP - WITH MY NEW NEURO TELLING ME TO GO CELEBRATE BECAUSE I DIDN'T HAVE MS.
HUH?????
HER TELLING ME THAT DIDN'T MAKE MY SYMPTOMS GO AWAY. AND IT DAMN SURE DIDN'T ANSWER MY QUESTIONS. I DIDN'T WANT MS...BUT IF I DIDN'T HAVE IT, WHAT EXACTLY DID I HAVE?
SO I WENT TO THE CLEVELAND CLINIC.
AFTER REPEAT TESTING, NEURO THERE TOLD ME I HAD A VIRUS ATTACK MY NEUROLOGICAL SYSTEM. SHE SAID MY SYMPTOMS WOULD EITHER GO AWAY COMPLETELY, DIMINISH OR STAY THE SAME...BUT THEY SHOULD NOT GET WORSE AND NEW ONES SHOULD NOT DEVELOP. AT THAT TIME I HAD PAIN IN BOTH LEGS AND RIGHT ARM, SLIGHT TREMORS, WEAKNESS. SHE DID TELL ME TO IMMEDIATELY GO TO ER FOR MRI AND LP IF NEW SYMPTOMS ARISE OR THE ONES I HAD WORSENED.
WOOHOO!!
SO I JUMPED BACK INTO LIFE AGAIN AND SHUT THE DOOR ON MY NEURO ISSUES. I WENT BACK TO WORK, GOT A NEW HOUSE AND NEW VEHICLE. SELF ESTEEM WENT BACK UP WHERE IT BELONGED, AS WELL AS SELF CONFIDENCE. MY SOCIAL LIFE WAS PERFECT AND I WAS HAPPY AS CAN BE.
BOOOOOOM!
13 MONTHS LATER, IT HIT AGAIN. I WAS HAVING BALANCE ISSUES...REFERRED TO MYSELF AS A SOBER DRUNK. LOL MY LEGS FELT HEAVY A LOT AND THE PAIN INCREASED. I DID GO TO HOSPITAL AS INSTRUCTED. THE DID NOTHING...NO MRI OR LP. SENT ME HOME. PAIN GOT EVEN WORSE AND THEN MY LEGS JUST QUIT WORKING. I ENDED UP IN THE HOSPITAL FOR A WEEK. THE NEURO TOLD ME IT WAS ALL IN MY HEAD. I WAS STUNNED! AND ANGRY. AND HURT. AND SCARED.
I WENT HOME AND TRIED TO OBSORB WHAT WAS GOING ON. MY LEGS GOT SOMEWHAT STRONGER. I WAS STILL A SOBER DRUNK, BUT I COULD WALK ON FLAT GROUND. AND I HAD NO PROBLEM GETTING ON A MOTORCYCLE.
SO I RAN. I GUESS I THOUGHT I COULD OUTRUN WHATEVER WAS GOING ON WITH ME. I HAD ALREADY LOST MY JOB AGAIN DUE TO NOT BEING ABLE TO PERFORM MY DUTIES (I HAD BEEN IN RETAIL MANAGEMENT FOR 10 YEARS). I (CONVENIENTLY) JUST GOT MY TAX RETURN SO I HEADED TO FLORIDA! LOL I HAD THE TIME OF MY LIFE!! I PARTIED WITH MY BIKER FRIENDS FOR 10 DAYS STRAIGHT. THEY HELPED ME WHEN I WAS HAVING TROUBLE WITH MY LEGS AND JOKED ABOUT PUTTING ME ON THE BIKE WITH BUNGEE CORDS. LOL
I TRIED RUNNING FROM MYSELF FOR ABOUT 5 MONTHS. THEN I HIT BOTTOM. MY NEURO ISSUES WERE NOT GOING AWAY. I ENDED UP STRANDED ON THE STREETS OF ORLANDO WITH $40 TO MY NAME.
A TRUCKER FRIEND OF MINE PICKED ME UP AND BROUGHT ME TO MY MOM IN CALIFORNIA. THAT WAS IN JULY OF 2008. I AM NOT RUNNING ANYMORE. I FOUND A WONDERFUL PRIMARY DOC THAT BELIEVES IN ME AND KNOWS IT IS NOT IN MY HEAD. HE IS TREATING MY SYMPTOMS. HE TRULY IS TRYING TO HELP ME BUT KNOWS I AM IN LIMBO AND TELLS ME TO JUST HOLD ON.
I THOUGHT I WAS GETTING A GREAT NEURO. WELL, HE JUST TOLD ME TO PULL UP MY BOOT STRAPS. HMMM OK. TIME TO GET A NEW NEURO!
I AM NO LONGER RIDING MOTORCYCLES. I CAN'T. I CAN WALK AROUND THE HOUSE SOME BUT AM MAINLY CONFINED TO A WHEELCHAIR NOW. I DID JUST GET A MOTORIZED SCOOTER WHICH HAS BEEN A GODSEND. MY PAIN IS PRETTY BAD AND NEVER GOES AWAY. I HAVE BLADDER PROBLEMS. FATIGUE...MS HUG...TREMORS...DOUBLE VISION...OTHERS.
I HAVE JUST FOUND AN MS NEURO IN LOS ANGELES...3 HOURS AWAY. I AM IN THE PROCESS OF GETTING A REFERRAL TO GO THERE. HOPEFULLY THIS NEURO SEES THAT MY BOOT STRAPS HAVE ALWAYS BEEN IN PLACE...BUT MAL-FUNCTIONAL.
BTW...ALL MY MRI'S SEEM TO BE NORMAL. BUT I JUST GOT ALL OF THE RECORDS AND FOUND OUT THAT NONE OF MY ONES TAKEN IN THE LAST 2 YEARS HAVE BEEN DONE WITH MS PROTOCOLS. I DON'T KNOW ABOUT THE ONES TAKEN IN THE BEGINNING.
THIS WEB SITE IS THE BEST ONE I HAVE COME ACROSS. I LOVE IT!
THANK YOU FOR LETTING ME TELL MY STORY.
ADDI (WHEW!! MY FINGERS HURT NOW!! LOL)
I AM NEW TO THIS COMMUNITY BUT NOT TO MS. I HAVE HAD NEUROLOGICAL PROBLEMS NOW FOR 5 YEARS. MY FIRST "EPISODE" WAS DIAGNOSED AS A MINI STROKE. LIFE WENT ON FOR 11 MONTHS AND THEN I WAS HIT AGAIN. THIS TIME I WAS IN THE HOSPITAL OVERNIGHT AND HAD X-RAYS, MRI, BLOOD WORK, LP AND WAS GIVEN A POSSIBLE MS DIAGNOSIS. OVER THE NEXT COUPLE OF MONTHS I LOST EVERYTHING DUE TO MY ILLNESS: JOB, VEHICLE, HOME, SELF-CONFIDENCE. I HAD MORE TESTING DONE - REPEAT MRI'S AND LP - WITH MY NEW NEURO TELLING ME TO GO CELEBRATE BECAUSE I DIDN'T HAVE MS.
HUH?????
HER TELLING ME THAT DIDN'T MAKE MY SYMPTOMS GO AWAY. AND IT DAMN SURE DIDN'T ANSWER MY QUESTIONS. I DIDN'T WANT MS...BUT IF I DIDN'T HAVE IT, WHAT EXACTLY DID I HAVE?
SO I WENT TO THE CLEVELAND CLINIC.
AFTER REPEAT TESTING, NEURO THERE TOLD ME I HAD A VIRUS ATTACK MY NEUROLOGICAL SYSTEM. SHE SAID MY SYMPTOMS WOULD EITHER GO AWAY COMPLETELY, DIMINISH OR STAY THE SAME...BUT THEY SHOULD NOT GET WORSE AND NEW ONES SHOULD NOT DEVELOP. AT THAT TIME I HAD PAIN IN BOTH LEGS AND RIGHT ARM, SLIGHT TREMORS, WEAKNESS. SHE DID TELL ME TO IMMEDIATELY GO TO ER FOR MRI AND LP IF NEW SYMPTOMS ARISE OR THE ONES I HAD WORSENED.
WOOHOO!!
SO I JUMPED BACK INTO LIFE AGAIN AND SHUT THE DOOR ON MY NEURO ISSUES. I WENT BACK TO WORK, GOT A NEW HOUSE AND NEW VEHICLE. SELF ESTEEM WENT BACK UP WHERE IT BELONGED, AS WELL AS SELF CONFIDENCE. MY SOCIAL LIFE WAS PERFECT AND I WAS HAPPY AS CAN BE.
BOOOOOOM!
13 MONTHS LATER, IT HIT AGAIN. I WAS HAVING BALANCE ISSUES...REFERRED TO MYSELF AS A SOBER DRUNK. LOL MY LEGS FELT HEAVY A LOT AND THE PAIN INCREASED. I DID GO TO HOSPITAL AS INSTRUCTED. THE DID NOTHING...NO MRI OR LP. SENT ME HOME. PAIN GOT EVEN WORSE AND THEN MY LEGS JUST QUIT WORKING. I ENDED UP IN THE HOSPITAL FOR A WEEK. THE NEURO TOLD ME IT WAS ALL IN MY HEAD. I WAS STUNNED! AND ANGRY. AND HURT. AND SCARED.
I WENT HOME AND TRIED TO OBSORB WHAT WAS GOING ON. MY LEGS GOT SOMEWHAT STRONGER. I WAS STILL A SOBER DRUNK, BUT I COULD WALK ON FLAT GROUND. AND I HAD NO PROBLEM GETTING ON A MOTORCYCLE.
SO I RAN. I GUESS I THOUGHT I COULD OUTRUN WHATEVER WAS GOING ON WITH ME. I HAD ALREADY LOST MY JOB AGAIN DUE TO NOT BEING ABLE TO PERFORM MY DUTIES (I HAD BEEN IN RETAIL MANAGEMENT FOR 10 YEARS). I (CONVENIENTLY) JUST GOT MY TAX RETURN SO I HEADED TO FLORIDA! LOL I HAD THE TIME OF MY LIFE!! I PARTIED WITH MY BIKER FRIENDS FOR 10 DAYS STRAIGHT. THEY HELPED ME WHEN I WAS HAVING TROUBLE WITH MY LEGS AND JOKED ABOUT PUTTING ME ON THE BIKE WITH BUNGEE CORDS. LOL
I TRIED RUNNING FROM MYSELF FOR ABOUT 5 MONTHS. THEN I HIT BOTTOM. MY NEURO ISSUES WERE NOT GOING AWAY. I ENDED UP STRANDED ON THE STREETS OF ORLANDO WITH $40 TO MY NAME.
A TRUCKER FRIEND OF MINE PICKED ME UP AND BROUGHT ME TO MY MOM IN CALIFORNIA. THAT WAS IN JULY OF 2008. I AM NOT RUNNING ANYMORE. I FOUND A WONDERFUL PRIMARY DOC THAT BELIEVES IN ME AND KNOWS IT IS NOT IN MY HEAD. HE IS TREATING MY SYMPTOMS. HE TRULY IS TRYING TO HELP ME BUT KNOWS I AM IN LIMBO AND TELLS ME TO JUST HOLD ON.
I THOUGHT I WAS GETTING A GREAT NEURO. WELL, HE JUST TOLD ME TO PULL UP MY BOOT STRAPS. HMMM OK. TIME TO GET A NEW NEURO!
I AM NO LONGER RIDING MOTORCYCLES. I CAN'T. I CAN WALK AROUND THE HOUSE SOME BUT AM MAINLY CONFINED TO A WHEELCHAIR NOW. I DID JUST GET A MOTORIZED SCOOTER WHICH HAS BEEN A GODSEND. MY PAIN IS PRETTY BAD AND NEVER GOES AWAY. I HAVE BLADDER PROBLEMS. FATIGUE...MS HUG...TREMORS...DOUBLE VISION...OTHERS.
I HAVE JUST FOUND AN MS NEURO IN LOS ANGELES...3 HOURS AWAY. I AM IN THE PROCESS OF GETTING A REFERRAL TO GO THERE. HOPEFULLY THIS NEURO SEES THAT MY BOOT STRAPS HAVE ALWAYS BEEN IN PLACE...BUT MAL-FUNCTIONAL.
BTW...ALL MY MRI'S SEEM TO BE NORMAL. BUT I JUST GOT ALL OF THE RECORDS AND FOUND OUT THAT NONE OF MY ONES TAKEN IN THE LAST 2 YEARS HAVE BEEN DONE WITH MS PROTOCOLS. I DON'T KNOW ABOUT THE ONES TAKEN IN THE BEGINNING.
THIS WEB SITE IS THE BEST ONE I HAVE COME ACROSS. I LOVE IT!
THANK YOU FOR LETTING ME TELL MY STORY.
ADDI (WHEW!! MY FINGERS HURT NOW!! LOL)
Thanks, JJ. I love, love, love my primary doctor, too. He really is in the business for his patients. He definitely goes the extra mile and gave me such a feeling when I met him and saw that he believed in me....makes such a difference. Now if I could just get a neuro who acts the same way! lol
Addi
Addi
COMMUNITY LEADER
Welcome!
Limbo is no place to be, but a lot of us find our selves there. I love love love your Primary Doctor, not too many out there who will go that extra mile when there isnt a dx, sure is a keeper.
Cheers.....JJ
Limbo is no place to be, but a lot of us find our selves there. I love love love your Primary Doctor, not too many out there who will go that extra mile when there isnt a dx, sure is a keeper.
Cheers.....JJ
THANK YOU, TONYA (THAT IS MY NAME TOO!). YEAH, I WAS RUNNING SCARED. IT WAS FOOLISH BUT I AM STILL GLAD I DID IT BECAUSE I HARDLY WALK AT ALL NOW AND NEVER RIDE....SO IT GAVE ME SOME PRETTY COOL MEMORIES.
MY PRIMARY DOC HAS GIVEN ME THE DIAGNOSIS OF NEURODEGENERATIVE POLYNEUROPATHY AND NEUROPATHIC MUSCULAR ATROPHY WITH PERIODS OF EXACERBATIONS.
HE DID THIS BECAUSE WITHOUT ANY KIND OF DIAGNOSIS I WAS HAVING PROBLEMS GETTING MEDICAL EQUIPMENT THAT I NEEDED (MOTORIZED SCOOTER) AND BECAUSE I AM 2 YEARS INTO APPLYING FOR SSI.
HIS WORDS TO ME ARE THAT I AM IN LIMBO AND HAVE TO PLAY THE WAITING GAME. AND TREAT THE SYMPTOMS WE CAN.
HE DID THIS BECAUSE WITHOUT ANY KIND OF DIAGNOSIS I WAS HAVING PROBLEMS GETTING MEDICAL EQUIPMENT THAT I NEEDED (MOTORIZED SCOOTER) AND BECAUSE I AM 2 YEARS INTO APPLYING FOR SSI.
HIS WORDS TO ME ARE THAT I AM IN LIMBO AND HAVE TO PLAY THE WAITING GAME. AND TREAT THE SYMPTOMS WE CAN.
Hello and Welcome to the Forum.
Wow! Sounds like you had quite an adventure ;) Glad that you are settled though and beginning to get things in order.
It is not uncommon for an MRI to come up "negative" on some who are dx with MS.
Several herre on the Forum have a dx of MS w/ normal MRI.
The "Health Pages" will give some info on that too.
I hope that your new Neuro will do you well and get you the answers you need. Just remember that you know your body better than anyone and what is normal for you and what is not. You have to be your own best advocate!
Good Luck to you and we will see you around the forum :0
Take Care,
Tonya
THANK YOU, ALL. I HAVE BEEN READING THROUGH ALL THE HEALTH PAGES AND FORUMS TOPICS, TOO. I HAVE LEARNED SOME THINGS, WHICH IS GREAT. I REALLY DO THINK THIS WEB SITE IS VERY WELL MADE AND INFORMATIVE.
I HAVE BEEN CHECKED FOR MANY THINGS: THYROID, LUPUS, RI, LYMES DISEASE. I DON'T KNOW ABOUT CIDP....WILL GO CHECK THAT OUT NOW. I HAVE NEVER HEARD OF IT.
I HAVE HAD 2 NERVE CONDUCTION TESTS. ONCE AT THE CLEVELAND CLINIC BUT IT WAS INCOMPLETE...HE MUST HAVE BEEN DOING SOMETHING WRONG BECAUSE IT HURT LIKE HELL. SO MUCH SO I HAD TO STOP THE TEST. THE SECOND ONE I HAD WAS IN OCTOBER, 2009.
RESULTS: THIS IS A REMARKABLY NORMAL EMG/NERVE CONDUCTION STUDY OF BOTH LOWER EXTREMITIES. THIS STUDY DOES NOT EXPLAIN THE PATIENT'S FINDINGS. UPPER MOTOR NEURON LESION SUCH AS MS OR MOTOR JUNCTION PROBLEMS SUCH AS MYASTHENIA GRAVIS ARE TWO EXAMPLES OF DISEASES THAT WOULD NOT SHOW UP ON AN EMG THAT COULD EXPLAIN SOME OF THIS PATIENT'S SYMPTOMS. WITH REGARD TO PROFOUND INFLAMMATORY MYOPATHY, OR SERIOUS NEUROPATHY, THIS STUDY DOES NOT CONFIRM THESE POSSIBLE DIAGNOSES.
DO THESE RESULTS RELATE TO WHAT YOU ARE TALKING ABOUT (CIDP)?
THANKS...
Now I'm just throwing this out there, only because it is what I am experiencing. Have the docs checked for Chronic Inflammatory Demyelinating Polyradiculoneuropathy. The symptoms you have are nearly an exact match to CIDP. I have been recently diagnosed with some form of polyneuropathy, and am experiencing very near to what you are. I'm simply waiting on my nerve conduction test to find out exactly what it is.
Ok, just thought I'd throw that out for food for thought. I am sorry that you are having an incredibly horrid time with the pain and all. Best of luck to you, and your search for the answers.
Ok, just thought I'd throw that out for food for thought. I am sorry that you are having an incredibly horrid time with the pain and all. Best of luck to you, and your search for the answers.
Hi Addi - you've found a great community that will help you, guide you and commiserate with you as you work through this. I hope you will come around often.
I'm so sorry that you have had such trouble finding answers. Being in limbo is not for the faint of heart - it sounds like you are tough enough to hang in there until the end.
Jen isright - check out our health pages and spend some time learning more that will be useful to you in your doctor visits.
be well, Lulu
I'm so sorry that you have had such trouble finding answers. Being in limbo is not for the faint of heart - it sounds like you are tough enough to hang in there until the end.
Jen isright - check out our health pages and spend some time learning more that will be useful to you in your doctor visits.
be well, Lulu
Welcome to the forum! Lots of great people here with good advice and ways to cope.
Feel free to ask anything - I do!
If you're looking for some information on MS, check out our HEalth Pages (upper right hand corner of the screen.) Some very readable articles that might help you.
Feel free to ask anything - I do!
If you're looking for some information on MS, check out our HEalth Pages (upper right hand corner of the screen.) Some very readable articles that might help you.
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