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    Old 10-25-2002, 12:56 PM   #1
    Polyjoee
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    HI,
    I WAS DIAGNOSED IN 1988 WITH PROGRESSIVE PERIPHERAL POLYNEUROPATHY OF UNKNOWN IDIOPATHIC ,ETIOLOGY, (PN) SO CALLED. I AM NOT A BIABETIC OR ANYONE I KNOW EVER HAD MY TYPE OF NEUROPATHY. AT THE EARLY STAGES OF MY ILLNESS WAS LIKE A NIGHTMARE,MY HANDS , ARMS BURNED LIKE HECK , LEGS FELT LIKE ICED COLD WATER RUNNING THROUGH THEM,LOST ALL MY STRENGHT,COULDN'T WALK ,TALK,EAT, THINK OR SLEEP .WENT TO DOCTORS AND THEY COULDN'T UNDERSTAND THE SYMPTOMS AND THOUGHT THAT I WAS LOSING MY MIND, AND SUGESTED THAT I GO TO A MENTAL INSTITUTION. AFTER 10 DAYS OF OBSERVATION THEY REALIZED THAT I WASN'T CRAZY AND HAD ME TRANSPORTED TO A MAJOR MEDICAL HOSPITAL. AFTER 5 WEEKS OF TESTS X-RAY'S,MRI,CS,EMG'S,DNA,BLOOD,SPINAL TAP'S,SURAL NERVE BIOPSIES,CANCER MEDS,LOSS OF 50 LB. ETC.,DOCTORS HAD COME TO A CONCLUSION THAT I HAD PROGRESSIVE PERIPHERAL POLYNEUROPATHY OF UNKNOWN ETIOLOGY. WITH NO CURE IN SIGHT THEY DECIDED TO SEND ME OUT TO A REHAB CENTER FOR PHYSICAL AND OCCUPATIONAL THERAPY, WHERE I SPENT 5 WEEKS LEARNING HOW TO WALK AND USE MY HANDS AGAIN.
    MY NEUROPATHY STARTED IN RIGHT HAND FINGER TIPS, WENT TO LEFT HAND UP TO SHOULDERS ,THEN TO BOTH FEET AND LEGS UP TO THE HIP.. JUST TO GIVE YOUR AN IDEA OF MY SYMPTOMS,THEY ARE: PAIN ,STATIC PAIN,

    BURNING,NUMBNESS, TINGLING,TWITCHING,DEEP ITCH ,BAD DEXTERITIES,BAD EQUILIBRIUM,HAMMER TOES,FOOT DROP,HAND DROP,SPONGY FEEL ,SWOLLEN FEET, DEPRESSION,FATIGUE,COLD CHILL'S ,SWEATS,SENSITIVE TO COLD,UNABLE TO RECOGNISE HOT THINGS , WEAK MUSCLES,COLON,BLADDER PROBLEMS ETC.THESE ARE JUST A FEW OF MY PN SYMPTOMS.I BEEN ON DISABILITY FOR 13 YEARS UNABLE TO WORK DRIVE ETC.I HAVE TRIED DIFFERENT MEDS INCLUDING NEURONTIN, BUT OF THE MEDS I HAVE TRIED NOTHING REALLY HELPED THIS TYPE OF NEUROPATHY.... THIS IS MY SOLO 13 YEARS EXPERIENCE WITH THIS DISEASE THAT NEEDS SO MUCH MORE RESEARCH AND SUPPORT .LIKE ALL OTHER DISEASES WE NEED TO FIGHT AND LOBBY WASHINGTON FOR FUNDS TO DO MORE RESEARCH ON THIS NERVE DISEASE THAT SO MANY PEOPLE ARE SUFFERING WITH.......IF ANY OF YOU HAVE ANY NEWS TO THIS DISEASE ,PLEASE I'M ALL EARS. WISH YOU ALL THE BEST OF HEALTH....PN...JOE


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    Old 10-26-2002, 04:52 PM   #2
    BOBBYJ
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    HELLO POLYJOEE,
    IT SOUNDS HORRIBLE, I AM NEWLY DIAGNOSED AND WOULD APPRECIATE ANY DIRECTION YOU MIGHT LEND. MY NEUROPATHY STARTED IN MY LEFT FOOT THEN SHIN, NOW RIGHT FOOT AND SHIN ARE INVOLVED. BOTH OF MY ARMS BURN EVERY NIGHT. I HAVE NOT HAD A DECENT NIGHTS SLEEP IN OVER A YEAR. SOME DAYS I CAN NOT GET OFF THE COUCH. WHAT KIND OF DOCTOR DO YOU SEE? WHAT MAKES YOUR SYMPTOMS FEEL BETTER? I HAVE HAD SO MUCH PAIN MEDICATION MY LIVER HAS BEEN AFFECTED. I HAVE A SEVEN YEAR OLD LITTLE BOY AND HE HATES THIS, AS I HAVE HARD TIME PLAYING WITH HIM. PLEASE HELP ME WITH YOUR POSITIVE WAYS OF SLOWING PAIN. HOW CAN YOU FUNCTION. KEEP UP THE GOOD WORK

     
    Old 11-05-2002, 10:33 AM   #3
    LarryGCline
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    Hi Jo,

    53 year old male with similar Dx Test possitive for small fiber neuropathy & periphral nueropathy. 4 years looking for viable solutions. Extensive study @ VA Med center, Univ. Pittsburg and Ohio State. Currently beeing evaluated for Amyloid neuropathy @ Cleveland Clinic. Current meds are Ultram, Topomax, Elavil, Keppra & Methadone with only minimal relief. My experience proves you are in a sea of un-empathetic arrogant professionals who have few answers. Multiple MRI's , CT's EMG/NVS, SSERs, Autonomics testing, Mylograms and byopsies show abnomalities. There is little to do except rely on pain meds and hope for the right combination of Doctors, therapies, medications and support. Remain possitive and stay focused in a seemingly bleak situation. Best wishes in a dilema that has few solutions

     
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