TM anyone?

[Tabitha]

Are there lots of people with Tranverse Myelitis on the board?
Can any of you share your experiences with me please? (ongoing symptoms/diagnosis and amount of recovery)
I don't know anybody else with it....

[SCI-Nurse]

I know we have other members with TM. I hope they will respond here.

Meanwhile, you may want to make contact with this organization:

http://www.myelitis.org/

(KLD)

[Sue Pendleton]

Are there lots of people with Tranverse Myelitis on the board?
Can any of you share your experiences with me please? (ongoing symptoms/diagnosis and amount of recovery)
I don't know anybody else with it....

Check your private topics Tabitha. I have a list of support groups around the world I just need a general location.

I do remember a visit to Dr Kerr and the question came up of "did your spinal infarct cause Tm or did TM cause your spinal infarct?" I have pretty much the same symptoms as mpost incomplete TMers.

Howlong have you had TM?

[Sue Pendleton]

Are there lots of people with Tranverse Myelitis on the board?
Can any of you share your experiences with me please? (ongoing symptoms/diagnosis and amount of recovery)
I don't know anybody else with it....

Check your private topics Tabitha. I have a list of support groups and just need a general location by state, province or country.

How long have you had TM and what was your original level of injury and have you had any recovery so far?

[Tabitha]

How long have you had TM and what was your original level of injury and have you had any recovery so far?[/quote]

since October 2005, T1 and yes the level of senstaion and the weakness in my limbs has improved enabling me to walk short distances badly, I have a poor grip and trouble standing from a sitting position, bowel and bladder disfunction, some loss of sensation and tingling (worse on my right side, I am right handed)

[lynnifer]

Since 1985 at age 12 going on 13 .. now 33. T12 complete paralysis and in wheelchair ... 20 years .. absolutely no recovery, give or take an inch of feeling around the waistline.

[Sue Pendleton]

since October 2005, T1 and yes the level of senstaion and the weakness in my limbs has improved enabling me to walk short distances badly, I have a poor grip and trouble standing from a sitting position, bowel and bladder disfunction, some loss of sensation and tingling (worse on my right side, I am right handed)

Is it possible to get 4-aminopyridine made up in the UK? I found it helped my sensation and really helped strength. That just a few months out your are up to working on standing is a good sign. If you cannot maintain physical therapy with a clinic than ask a PT to write up some exercises you can do at home for strength and range of motion. Are you on a drug for your bladder like oxybutynin or Detrol?

[sherrie1964]

Tabitha Your Definatly Not Alone , In October Of 2005 I Was Diagnosed With Idiopathic Transverse Myelitis, MY RECOVERY IS FAIR TO GOOD, BUT I HAVE REALLY BAD DAYS. I STILL HAVE SOME NUMBNESS IN MY RIGHT LEG, MY RIGHT KNEE AND FOOT CHOOSE TO GO NUMB WHEN EVER THEY WANT TO AND THE MUSCLE SPASMS GET PRETTY BAD AT TIMES, AND VERY BAD BURNING IN MY LEGS. NIGHT SEEMS TO BE THE WORSE AND GETTING UP IN THE MORNING. I COULD NOT LIVE WITHOUT MY NEUONTIN MED. MY BLADDER WORKS WHEN IT WANTS TO AND MY BOWEL MUSCLE STILL DOESN'T WANT TO WORK , MY SEX LIFE IS OVER I HAVE NO FEELING. ALL IN ALL IM NOT IN A WHEEL CHAIR, IM ABLE TO CAREFULLY WALK, IM ALIVE AND THE DEPRESSION IS GETTING BETTER. IM ONE OF THE LUCKY ONES SOME OF YOU HAVE IT WORSE THAN ME . IF I DON'T END UP WITH MS ILL CONSIDER MYSELF MUCH LUCKIER. KEEP YOUR HEAD UP AND THE BEST OF LUCK TO YOU. OH P.S. IF YOU HEAR ANY INFO. ON BURNING SENSATIONS , HOT AND COLD SPOTS PLEASE POST INFO.

[Lookingup]

I'm almost 13 years out because of a spinal infarct at T-6. I have extreme burning and pain from the level of my injury down. I use detrol to help with the bladder "works," and am a yo-yo as to bowel things. I feel no hot or cold in both legs, although my right leg is much more functional than my left. I'm on 2400 mg Neuronton, which has helped and am probably going to have a battery pack and electrodes implanted to see if that helps with the burning.
I am so blessed to have the use of my hands and arms. I also have a great doctor that has really stayed with me through this. He said if I had one "good" leg and two good arms, I could walk. I can walk a bit in the house, but can't walk far or stand very long. I am so thankful that I can get meals for my husband and me, although they aren't as good as they used to be! So many things, you really need two hands. When you are leaning on a cabinet for stability, it is hard to pour from a pan, handle a skillet, etc.
Just keep on trying, even though it seems like everything is so hard. Remember. you are still in there, it is just the workings that have changed.

[anty]

Hi I have transverse mylitis for 4 years now. I am 41. i am left as a incomplete c-5 c-6 i was complete in the begining could not move anything from chest down. I also met with DR.KERR. I still do therapy to make myself as strong as i can be. I cant walk,but can move everything i do my standing frame everyday to keep bones strong.I am now waiting for a bike to build up some muscles in my leg. Everyone with TM is different. I also take 4-AP med helped me alot still getting return. If you have any questions PM me. anty :)

[Tabitha]

THanks :)

[Kristi]

I also have TM and am almost 11 years post. I got the virus through a Lupus flare at the time. I started out as no movement below my neck, but after I came out of coma my arms started to come back SLOWLY. I'm diagnosed between a T2 to a T4. I have full function of my arms, fingers, etc. I have no pain thankfully with it, but nothing has returned from my injury level on down. My spasms are controlled with 50 mg of baclofen twice a day and I ride bike at least 4 to 5 times a week to keep my legs flexible. In talks with my neuro and rheumotologist to hopefully try me on 4-AP and see if anything returns.

[VETTECH33]

I was diagnosed with TM October of 2004. My lesion was from T-4 - T-9. My right leg was completely paralyzed and my left leg had no feeling. I was in the University of Pennsylvania Hospital for 2 weeks and went home to live with my parents. I had rehab in the home for 3 weeks then outpatient rehab for 3 months. I can walk, run, drive a car, and feel almost normal. I have a lingering tingling in both feet, and sometimes feel a little uncoordinated, but feel normal otherwise. I had a little relapse June of 2005, and have been on steroids since. I finally just got diagnosed with Sjogren's Syndrome and Devic's Disease, either could have caused the TM. I am one of the lucky ones, I am able to work full time and continue doing everything I did before I had TM.
Christine

[HttWheel]

Ur not the only one, i have had TM for 2 years now (new comer). I got it when i was 14

[pnadolsky]

My son was diagnosed with TM on 11/18/2005. He is a T-10 complete. He is paralyzed from the waist down. We have been at KKI until last week. He has been doing restorative therapy. We are hoping with a combination of his efforts, Dr. McDonald and Dr. Kerr that Ben will recover. He is 9 years old. We are lucky to have the FES bike and EasyStand 6000 in our home. We do have 4AP, but we haven't tried it yet.

How long was it before muscles started to return?? Pam

[Sue Pendleton]

Pna,

My inury was from a spinal stroke at C4 and incomplete ASIA B (feeling but no movement). I did recover breathing on my own at 7 or 8 days but my right arm (my stronger side) began within another 3 weeks or so. Then not much at all until 18 months or so and continued for 8 years. It was slow but steady. I'm a C-5-7 with weight bearing ability and when not sick (hate being sick) can sit up using stomach muscles. Still have quad gut though. I'd encourage Ben to use the FES and Glider as much as possible and swim when summer comes. Check him out in a therapy pool first and learn some exercises he can do in water and hey, it just plain feels good to have the weight off your butt and act like a kid.

Do not take 4-AP that is compounded if it has been sitting around. It loses it strength rapidly and you can't tell what dose he'd be getting. If the pharmacy you get it from is nearby I'd ask for 15 days at a time and speak with the pharmacist about how often he refills his supplies. I took it for several years and it helped both muscles and sensation a lot. The only reason I stopped was acid reflux. It runs in my family and the compounded formula did a number on me. I had no problems when I was in the Fampridine trial. Obviously follow Drs McDonald and Kerr's advice on dosing and ramping up to a steady dose. Spring break may be a good time to start to see if it bothers his falling asleep. That seems to be the biggest complaint I've heard about it.

[Sue Pendleton]

I was diagnosed with TM October of 2004. My lesion was from T-4 - T-9. My right leg was completely paralyzed and my left leg had no feeling. I was in the University of Pennsylvania Hospital for 2 weeks and went home to live with my parents. I had rehab in the home for 3 weeks then outpatient rehab for 3 months. I can walk, run, drive a car, and feel almost normal. I have a lingering tingling in both feet, and sometimes feel a little uncoordinated, but feel normal otherwise. I had a little relapse June of 2005, and have been on steroids since. I finally just got diagnosed with Sjogren's Syndrome and Devic's Disease, either could have caused the TM. I am one of the lucky ones, I am able to work full time and continue doing everything I did before I had TM.
Christine

Christine can you explain a little about what Devics and Sjogren's Syndrome are like? Devics will be covered during the symposium in Baltimore. Please check the first posting. I'd love to meet everyone who can make it. And yes, you are one of the lucky ones. Most who recover so well from TM tend to be left with a lot of nerve pain.

[keithtim]

I too am looking forward to symposium. Devic's was thought (some still do) to be a severe form of MS. It normally only effects the spinal cord and optic nerve. When my partner was diagnosed in March of 05, there were only 200 known case's in the US. Now there are more than 500 thanks to a new test done through the Mayo Clinic. Devic's is misdiagnosed as MS in as many as 30% of the cases. I took him to the hospital with headache,neck ache and flu like symptoms. He was originally diagnosed as having meningitis and admitted. After 5 days he became blind, 3 days later he was paralyzed from neck down. He was discharged after 29 days to nursing home and we were given very little hope. He now can read (with magnifier) walk pretty well but sometimes has to use cane.