Re: [TMIC] My Story
You have quite a story to tell – without a happy ending.Your courage and determination for independence is admirable. I have only had TM for 4 years and am walking with a cane.I was quite active before TM hit, so it was quite a shock to get used to.(Like so many others). I hope you will enjoy being a part of us here and will always feel free to join in in whatever we are talking about. Glad to have you – just hate the reasoning for it. Janice, Missouri From: Anne Shreve Sent: Saturday, August 06, 2011 12:14 AM To: tmic-list@eskimo.com Subject: [TMIC] My Story Hi everyone, my name is Anne, 58 years young, and live in North Carolina. I was diagnosed with tm in 1971. All the doctors were completely stumped, they had never seen anyone come into the hospital for a bladder dialation procedure and wake up 2 days later completely paralyzed from the waist down. My family had me transferred to another hospital where the dr. there did a mylogram the very next morning. There was just one thing that went wrong. The dr. inserted the dye/contrast however, he forgot all about drawing the dye out after the test was complete. I went on to a full recovery after a 4 month hospital stay. Then in 1993 I noticed that my legs started feeling very heavy and I was having a great deal of pain radiating down my spine, into my hips and continuing down my legs. Oddly enough, I was then working in the very hospital that I had recovered in back in 1971 so one day I went to the medical library and to my surprise every book that I picked up researching tm, had my name in it along with one other gentleman who lived about 8 miles from me. Anyway, after seeing several neurologists, I was told that the leftover dye had attached itself to my spine and had destroyed the myelin (the protective covering) over our nerve endings leading away from the spine. It progressed rapidly and I found myself using a walker, but within just a few months I was in a wheelchair. For the last 12 years my life has consisted of either being in a hospital bed or my power scooter. I don't suppose I will ever walk again. But I continue to live alone, with my son and daughter checking in on me and getting me to my dr. appointments. I probably should be in a nursing home but as long as I can continue to function in the capacity that I am currently in, I just want to stay at home. Please keep me in your prayers and thanks for hearing my story. Take care everyone and God Bless you all. Anne
Re: [TMIC] my story
Thank you Frank for sharing your story; Obviously you are worse off than I am. God bless you; your tenacity with TM is an inspiration to me. please keep in touch gerry From: [EMAIL PROTECTED] [EMAIL PROTECTED] To: Gerry Surette [EMAIL PROTECTED] Subject: Re: [TMIC] my story Date: Tue, 26 Feb 2008 09:52:17 -0500 Gerry, My name is Frank. I was afflicted with TM in 2000. I, too, have pain from my shoulders down, along with cramps and left side weakness. I also have the cold/ hot thing going on, especially on my left side. I was poorly treated for the first year, then found Dr. Douglass Kerr at Johns hopkins in baltimore. He changed my meds. Along the way I found the pain clinic at the Montreal General Hospital where Dr. Mark Ware is my pain doctor. He put me on Sativex- a cannabinoid spray, actually better than cannabis bought on the street, plus it's legal in Canada and the U.S.. I take it twice a day with excellent results. It lasts 8 hours! I also take Nortriptyline, Dextromethorphan, Phenobarbital and other meds for various secondary conditions. I live part time in Montreal with my girl-friend, and part-time in Freeport Maine. I just bought an Co-op apartment here in Montreal, across the street from my girl-friend's house. We plan to rent out here home and basement apartment, and live in my apartment. That way she'll have money coming in and less up-keep than her townhouse. I was 15 month's retired when struck with TM. Take care
RE: [TMIC] my story
Welcome aboard Gerry! As the saying goes around here, Glad you found us but sorry you had too. You'll find this is a wonderful family and a wealth of info and support. It sounds like your an old time TM'r with nearly 40 years as a survior! Thats great! We will keep you and your new trials in our prayers. Larry in Oklahoma who is fighting the flu! From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Date: Mon, 25 Feb 2008 16:19:32 -0500 Subject: [TMIC] my story HI; My name is gerry; someone asked me for my story why i do not know anyway here goes. I am 60 years young. I first contact tm at the age of 21. I paralysized from the lung cage down. including a 2month stay in icu I was in the hospital for approximately 5 months. I had to learn to walk again etc. three years later I had another episode this time lasting two months. full recovery until 2001 when the symtoms returned. I now have constant pain 24/7 I have no circulation to speak of My brain can not g9ive my body correct temperatures. sometimes I feel cold when I am actually quite warm and sometimes I feel warm when I am actually cold. This event is certainly brought to the forefront when I cuddle up to my poor wife in the middle to the night. and wrap my cold hands around her body. since last Saturday I have slept but 4 hours. I get these muscle spasms which hurt like hell pardon the expression. There is nothing to be done for them . I take quinne but it doesn't seem to help. These last from a few minutes to 6 hours as it did last noth. soemtimes I get five or six a night. I take wellbutrin for depression,gabapentine for pain and a whole bunch of othere pills to help me walk. Yes I am fortunate that I can still walk . Every step is pain galore. I use a cane but have a walker and wheelchair for the very near future. Last week I was diganosed with ITP ablood cell disorder whereby my white blood cells are killing each other off. Next Monday I will be enteing the hospital for chemo , radiation and a bone marrow transplant. Oh my life is far from dull. Every day brings new challenges, new adventures,. Every morning I pray for strenght. Every day I try to accomplish something whether its laundry preparing evening meals or just cleaning up the apartment. we have a cat ; Astray I picked up .She feels right at home. She sleeps at the foot of the bed. I love cooking; barbequing; walking; Yes I force myself to walk and when the weather is bad I walk along the corridor sometimes climbing up and down the stairs. but most of all I love my wife. it is scary but she reads my mind. She is my caregiver; my soulmate. I don't know what i would do without her. I thank God almighty for sending here to me.I too will need your prayers for next week. many thanks. gerry
RE: [TMIC] My Story
Natalie, welcome to a very elite group. A group that no-one really wants to be a part of!! But TM it is and we all have different stories, meds, aches, pains, problems to share, so do not hesitate. I was just wondering the extent of the damage? Are you in a wheelchair, walker, cane? I had to cath for a few months but then I was able to get more control. Tho now I've just seen a new neurologist who is going to try to fix my leakage problem. He said today there are some new advances even using Botox. Well if that happens I want him to use it on my face also. :-) Having turned 60 this year I could use a great deal of botox.. My TM hit in 2002 and I use a walker to get around. Have problems with pain and still trying new drugs to help that situation! Again, welcome to the group we come in all ages, sizes, denominations and political ideologies. Tho religion and politics are not discussed. :-) There are no dumb or embarrassing questions! After what most of us have been thru modesty is no longer one of our hang-ups! Sincerely, Trudy from Virginia (where we are still reeling from the Virginia Tech atrocity) _ From: natalie mizenko [mailto:[EMAIL PROTECTED] Sent: Wednesday, April 25, 2007 3:59 PM To: Transverse Myellitis Subject: [TMIC] My Story Candis asked for my story so here goes Around the 2nd wk. of Dec. 06 I was walking back to bed from the restroom and collapsed in the floor. I stood up only to find I could walk on one leg only. On Dec. 13th my husband took me to Little Rock, Arkansas, to a hospital there where my back dr. had privileges. He had some tests given and told me Natalie it is not a surgery case this time -- something else is happening. He was going on vacation the next week, so I had to go to a rehab center - which was awful. The dr. was sooo mean and they kept trying to make me walk and I couldn't. My doc. returned back and put me back into the hospital. I had my spinal cord stimulator removed and that night had an MRI. Soon, he told me I had TM. He said I will give you some steriods and try and reverse it. He gave me some (don't know how much) and asked me the next day do you feel any more, like below T12? Which is the area of my injury. I said no. This was repeated the next day. I was then asked which rehab center did I want to go to? . The one I wanted to, was too full, so once again I went to a small one. Not much better than the other one. I decided within the first week of attending there, I wanted to get to a bigger place and be exposed to more than I was already seeing what was around me. I told my family Baylor in Dallas. So I went there for 6 wks. of rehab. About one mth. ago I returned home, having been gone a total of 3 mths. since TM had hit me. I was cathing before this happened, but standing up which I found was the easiest way to for me. I once again taught myself to cath at Baylor while sitting in bed, but after my last hospital stay having had a foley in me for a couple days; my bladder has gone crazy. I'm to see my urologist in L.R. next week, but I have a malignant tumor (MRI in TX) picked it up on my kidney and I bet he will focus on that instead. It's not a big tumor now. I'm more upset about all this urine everywhere after I cath Oh welland so it goesNatalie _ Ahhh...imagining that irresistible new car smell? Check out new http://us.rd.yahoo.com/evt=48245/*http:/autos.yahoo.com/new_cars.html;_ylc= X3oDMTE1YW1jcXJ2BF9TAzk3MTA3MDc2BHNlYwNtYWlsdGFncwRzbGsDbmV3LWNhcnM- cars at Yahoo! Autos.
Re: [TMIC] MY STORY, PLEASE KEEP THIS GOING TO HELP THE NEWLY DIAGNOSED FOLKS.
Wow, John, I bet you came to dread Fridays. I've only had one spinal tap and myelogram (they had MRIs but it was Labor Day weekend and no one was there to run the machine) and I hope to never have either one again. Thanks for sharing your story. You've had quite a lot on your plate. You seem to have come through it all well. As we so often say to newcomers -- I'm so glad you found us but so sorry you had to get TM to do so. Barbara H. _http://barbarah.wordpress.com/_ (http://barbarah.wordpress.com/) In a message dated 2/1/2007 11:47:58 AM Eastern Standard Time, [EMAIL PROTECTED] writes: HEY YALL' MY NAME IS JOHN HOLDEN I WANTED TO TELL ALITTLE ABOUT MYSELF AND CANNOT FIGURE OUT HOW TO DO MY PROFILE SO I CAN DO IT THIS WAY. I AM NOT SCREAMING, JUST LIKE TO USE CAPS. I AM 47 YEARS OLD FROM NJ AND NOW LIVE IN TEXAS. I WAS PARALIZED FROM TRANSVERSE MYELITIS AT AGE 14 ON APRIL 13, 1974. I WAS WALKING AROUND EARLY AT A FLEA MARKET FOR HOURS. I CAME HOME AND MY LEGS WERE TINGLING AND IT FELT LIKE I HAVE SOMEONE TAKING A KNIFE INTO THE SIDE OF MY LEG FROM MY HIP TO MY FEET ANT IT WAS BURNING. I WAS AT MY GRANDMOTHER'S HOUSE AS MY MOM WAS KILLED IN A CAR ACCIDENT AT MY AGE OF FOUR. SO MY FATHER AND GRFANDMOTHER RAISED ME. I THOUGHT MY LEGS WERE JUST TIRED SO I TURNED DOWN LUNCH AND WENT TO LAY DOWN. I HAD A 104 DEGREE FEVER AND MY LEGS WERE TINGLING FROM MY KNEES DOWN WHEN I AWAKENED. I HAD NO BLADDER CONTROL AND WET MY PANTS. I ATTEMPTED TO WALK AND KEPT FALLING OVER. MY FAMILY DOCTOR WAS A FRIEND ALSO AND HE TOLD MY GRANDMOTHER TO TAKE ME TO THE EMERGENCY ROOM IMMEDIATELY. WE HAD HAD A HURRICANE AND GRANDMA LIVE OUT IN A RURAL DIRT ROAD AND ALL TREES FELL DOWN AND WE WERE CUTTING THEM DOWN CLEARING THE ROADWAY OF TREES. THE DOCTORS FELT I MAY HAVE BEEN BITTEN BY SOME INSECTS AND MAY HAVE CAUGHT SOMETHING. I HAD HAD ALL OF MY CHILDHOOD VACCINATIONS, POLIO, ETC. I HAD A FOREIGN DOCTOR INTERN I WAS GIVEN ALCOHOL RUBS. DR. RAUSCHWERTH WHO MISDIAGNOSED MY SPINAL VIRUS AND SENT ME HOME WITH DARVON . ( YOU KNOW THE OLD STORY, TAKE 2 OF THESE EVERY 4 HOURS AND CALL ME IN THE MORNING). WHEN THE NEXT DAY I WAS RUSHED BACK TO THE HOSPITAL PARALIZED FROM THE CHEST DOWN WITH HEART MURMURS. AND A 106 DEGREE FEVER. I WAS ADMITTED TO THE HOSPITAL IMMEDIATELTLY THROUGH THE EMERGENCY ROOM . MY FAMILY DOCTOR HAD THE INTERN ER DR. FIRED AS HIS NAME WAS OFF THE ROSTER WHEN I RETURNED TO THE HOSPITAL. MY FAMILY DOCTOR WAS ON THE BOARD OF DIRECTORS AT THE HOSPITAL. I WAS GIVEN ALCOHOL RUBS AND PACKED IN ICE IN BED AND WAS THEN STARTED ON ANTIBIOTICS AS THE VIRUS FED ON THE PROTEIN IN THE SPINAL FLUID. IT STARVED AND KILLED THE NERVES. I WAS GIVEN SPINAL TAPS AND MYLEGRAMS EVERY FRIDAY FOR 8 MONTHS TO CHECK THE SPINAL FLUID PROTEIN LEVEL TO FIND IF THE VIRUS WAS GOING AWAY. THE NURSES WERE LAZY AND LEFT ME LAY IN MY EXCREMENT AND I DEVELOPED DECUBITI ULCERS OR BEDSORES ON MY SACRAL AREA AND IT HAMPED MY REHABILITATION FOR MONTHS WHILE THEY HEALED. I THEN WAS DISCHARGED FROM THE HOSPITAL WALKING ON LEG BRACES WITH QUAD CRUCTHES. I FELL AND DISLOCATED MY RIGHT HIP AND HAD 2 UNSUCCESSFUL SURGERIES TO REPAIR IT. I WENT BACK TO SCHOOL AND FINSHED HIGH SCHOOL AND TECHNICAL SCHOOL AND RECEIVED MY ELECTRONIC TECHNICIAN CERTIFICATION AND HAD MANY JOB AND LATER WENT INTO POLICE 911 OPERATOR JOBS. I JUST RETIRED AFTER 25 YEARS ON DISABILITY WITH NRE BACK AND NECK INJURIES. I MARRIED IN 1982 AND AND DIVORCING AND ON DEPRESSION MEDS AND NEURONTIN AND ZANAFLEX NOW. I RECENTLY MOVED TO TEXAS AND AM MOVING ON WITH MY LIFE. I USED TO TEACH IN SCHOOLS ON 911 AND DISABILITY AWARENESS WITH GRAMMER SCHOOL CHILDREN. I DID EMERGENCY VOLUNTEER WORK WITH CB AND AMATEUR (HAM) RADIO. I WAS A LT. COL. IN CIVIL AIR PATROL AND WAS DIRECTOR OF COMMUNICATION FOR CIVIL AIR PATROL. I AM NOT DOING MUCH NOW BUT KARAOKE HERE AND THERE. WELL THAT'S MY STORY. JUST REMEMBER MEDICAL BREAKTHROUGHS ALWAYS HAPPEN. THEY DID NOT HAVE MRI'S OR CATSCANS THEN. MIRACLES HAPPEN AND SOMEDAY THEY WILL BE THERE FOR US. I WOULD LIKE TO THANK ALL INCLUDING ALL INVOLVED IN MAKING THIS WEBSITE POSSIBLE AND FOR STARTING THIS INFORMATIVE GROUP. PEACE AND GOD BLESS AND GOD SPEED TO Y'ALL. JOHN HOLDEN LEAGUE CITY, TEXAS
Re: [TMIC] MY STORY, PLEASE KEEP THIS GOING TO HELP THE NEWLY DIAGNOSED FOLKS.
Hi John, Thank you for sharing your story with all of us. A big Hearty Welcome to the TM Family. I am so sorry you have had to go through so much. You seem to have a great attitude and please remember to visit us frequently so that we know how you are doing. God Bless Linda - Original Message - From: [EMAIL PROTECTED]mailto:[EMAIL PROTECTED] To: tmic-list@eskimo.commailto:tmic-list@eskimo.com ; [EMAIL PROTECTED]mailto:[EMAIL PROTECTED] Sent: Thursday, February 01, 2007 10:48 AM Subject: Re: [TMIC] MY STORY, PLEASE KEEP THIS GOING TO HELP THE NEWLY DIAGNOSED FOLKS. Wow, John, I bet you came to dread Fridays. I've only had one spinal tap and myelogram (they had MRIs but it was Labor Day weekend and no one was there to run the machine) and I hope to never have either one again. Thanks for sharing your story. You've had quite a lot on your plate. You seem to have come through it all well. As we so often say to newcomers -- I'm so glad you found us but so sorry you had to get TM to do so. Barbara H. http://barbarah.wordpress.com/http://barbarah.wordpress.com/ In a message dated 2/1/2007 11:47:58 AM Eastern Standard Time, [EMAIL PROTECTED] writes: HEY YALL' MY NAME IS JOHN HOLDEN I WANTED TO TELL ALITTLE ABOUT MYSELF AND CANNOT FIGURE OUT HOW TO DO MY PROFILE SO I CAN DO IT THIS WAY. I AM NOT SCREAMING, JUST LIKE TO USE CAPS. I AM 47 YEARS OLD FROM NJ AND NOW LIVE IN TEXAS. I WAS PARALIZED FROM TRANSVERSE MYELITIS AT AGE 14 ON APRIL 13, 1974. I WAS WALKING AROUND EARLY AT A FLEA MARKET FOR HOURS. I CAME HOME AND MY LEGS WERE TINGLING AND IT FELT LIKE I HAVE SOMEONE TAKING A KNIFE INTO THE SIDE OF MY LEG FROM MY HIP TO MY FEET ANT IT WAS BURNING. I WAS AT MY GRANDMOTHER'S HOUSE AS MY MOM WAS KILLED IN A CAR ACCIDENT AT MY AGE OF FOUR. SO MY FATHER AND GRFANDMOTHER RAISED ME. I THOUGHT MY LEGS WERE JUST TIRED SO I TURNED DOWN LUNCH AND WENT TO LAY DOWN. I HAD A 104 DEGREE FEVER AND MY LEGS WERE TINGLING FROM MY KNEES DOWN WHEN I AWAKENED. I HAD NO BLADDER CONTROL AND WET MY PANTS. I ATTEMPTED TO WALK AND KEPT FALLING OVER. MY FAMILY DOCTOR WAS A FRIEND ALSO AND HE TOLD MY GRANDMOTHER TO TAKE ME TO THE EMERGENCY ROOM IMMEDIATELY. WE HAD HAD A HURRICANE AND GRANDMA LIVE OUT IN A RURAL DIRT ROAD AND ALL TREES FELL DOWN AND WE WERE CUTTING THEM DOWN CLEARING THE ROADWAY OF TREES. THE DOCTORS FELT I MAY HAVE BEEN BITTEN BY SOME INSECTS AND MAY HAVE CAUGHT SOMETHING. I HAD HAD ALL OF MY CHILDHOOD VACCINATIONS, POLIO, ETC. I HAD A FOREIGN DOCTOR INTERN I WAS GIVEN ALCOHOL RUBS. DR. RAUSCHWERTH WHO MISDIAGNOSED MY SPINAL VIRUS AND SENT ME HOME WITH DARVON . ( YOU KNOW THE OLD STORY, TAKE 2 OF THESE EVERY 4 HOURS AND CALL ME IN THE MORNING). WHEN THE NEXT DAY I WAS RUSHED BACK TO THE HOSPITAL PARALIZED FROM THE CHEST DOWN WITH HEART MURMURS. AND A 106 DEGREE FEVER. I WAS ADMITTED TO THE HOSPITAL IMMEDIATELTLY THROUGH THE EMERGENCY ROOM . MY FAMILY DOCTOR HAD THE INTERN ER DR. FIRED AS HIS NAME WAS OFF THE ROSTER WHEN I RETURNED TO THE HOSPITAL. MY FAMILY DOCTOR WAS ON THE BOARD OF DIRECTORS AT THE HOSPITAL. I WAS GIVEN ALCOHOL RUBS AND PACKED IN ICE IN BED AND WAS THEN STARTED ON ANTIBIOTICS AS THE VIRUS FED ON THE PROTEIN IN THE SPINAL FLUID. IT STARVED AND KILLED THE NERVES. I WAS GIVEN SPINAL TAPS AND MYLEGRAMS EVERY FRIDAY FOR 8 MONTHS TO CHECK THE SPINAL FLUID PROTEIN LEVEL TO FIND IF THE VIRUS WAS GOING AWAY. THE NURSES WERE LAZY AND LEFT ME LAY IN MY EXCREMENT AND I DEVELOPED DECUBITI ULCERS OR BEDSORES ON MY SACRAL AREA AND IT HAMPED MY REHABILITATION FOR MONTHS WHILE THEY HEALED. I THEN WAS DISCHARGED FROM THE HOSPITAL WALKING ON LEG BRACES WITH QUAD CRUCTHES. I FELL AND DISLOCATED MY RIGHT HIP AND HAD 2 UNSUCCESSFUL SURGERIES TO REPAIR IT. I WENT BACK TO SCHOOL AND FINSHED HIGH SCHOOL AND TECHNICAL SCHOOL AND RECEIVED MY ELECTRONIC TECHNICIAN CERTIFICATION AND HAD MANY JOB AND LATER WENT INTO POLICE 911 OPERATOR JOBS. I JUST RETIRED AFTER 25 YEARS ON DISABILITY WITH NRE BACK AND NECK INJURIES. I MARRIED IN 1982 AND AND DIVORCING AND ON DEPRESSION MEDS AND NEURONTIN AND ZANAFLEX NOW. I RECENTLY MOVED TO TEXAS AND AM MOVING ON WITH MY LIFE. I USED TO TEACH IN SCHOOLS ON 911 AND DISABILITY AWARENESS WITH GRAMMER SCHOOL CHILDREN. I DID EMERGENCY VOLUNTEER WORK WITH CB AND AMATEUR (HAM) RADIO. I WAS A LT. COL. IN CIVIL AIR PATROL AND WAS DIRECTOR OF COMMUNICATION FOR CIVIL AIR PATROL. I AM NOT DOING MUCH NOW BUT KARAOKE HERE AND THERE. WELL THAT'S MY STORY. JUST REMEMBER MEDICAL BREAKTHROUGHS ALWAYS HAPPEN. THEY DID NOT HAVE MRI'S OR CATSCANS THEN. MIRACLES HAPPEN AND SOMEDAY THEY WILL BE THERE FOR US. I WOULD LIKE TO THANK ALL INCLUDING ALL INVOLVED IN MAKING THIS WEBSITE POSSIBLE AND FOR STARTING THIS INFORMATIVE GROUP
