we need info

[amy]

 Hi , my sis has been diagnosed we a form of myelitus she has lost the use of her legs for now and is in terrible pain..she is recieving plasma exchange and many tests, is there anyone out there who can give us some positive info ..experiences...it seems rare so anything.....someone?

Amy Douglas
a...@upinsmokedesign.com

[Steven Moyer]

Hello Amy, the best info and TM community is linked below:

 

http://www.myelitis.org/

 

http://health.groups.yahoo.com/group/transversemyelitissupport

Steve M.

[RoeJoe]

Hi:

my mom was diagnose approximately 4 months ago. She had lost use of
both legs. She too had IVIG treatment and Plasma Pheresus. She had a
large lesion on her spine. The Plasma Phereses worked a little and she
started to wiggle her toes and have prickly feeling. She has lost
bowel and bladder control and still cannot walk. She just went back to
the hospital Saturday as she was screaming in agony and almost passed
out from an excrutiating new type of pain in her back. Not sure what
it is, they took another MRI and said there is no lesion. But she
cannot walk so there must be a mistake. It seems to me (as we have
gone everywhere and sent records to Mayo clinc and other hospitals)
that the Doctors are absolutely clueless about this illness, we simply
cannot get a straight answer anywhere. I am sorry to hear about your
sister. This is scary because its the unknown. Some positive info is
that I have been reading alot on the internet from actual patients (not
doctors) and alot of people have recovery, not fully as they still
experience tingling and sometimes burning sensations, but alot of them
are able to walk again. Hope all goes well. Please let me know how
the plasma treatment is working for your sister!

Take Care
Rhonda

[AMY DOUGLAS]

Hi Rhonda, I know exactly what you mean when no one seems to know what to do
or what is going on ....we expect the doctors to have the answers and it is
not always the case. My sis has been diagnosed with ADEM . It comes under
the myelitus umbrella she has gained some movement in her legs but the
muscle wastage is quiet shocking she lost 2 stone. So slowly but surely
things seem to be progressing.
The plasma exchange stabilised her so the swelling stopped but she is still
numb from the belly button down.
We are all trying to keep her spirits up she has good days and bad
...getting quiet grumpy and cross with it all so i suppose that is a good
sign.
All the best Amy

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[jane]

hi there amy my son has transversa myelitus he was 14 when he started
with it which was january of this year he is now 15 he went into
intensive care, his breathing went low so they were ready to put him
on machines he didnt lose complete use of is legs and arms but was very
week my son is 6ft tall he was on the childrens ward at Derby City
Hospital i spoke to a nurse on ward she told me she had worked with
children for 21 years and never nursed a child with this illness i was
tellin them what i had read and been tld about it they hadnt got a clue
what it is. My son still has the illness when i ask questions about
this illness all they say is you want to think yourself lucky he hasnt
had the full strength of it. My son has periods of 2 weeks were he has
a bout of it were me and is father have to put him into bed he has bad
kidneys he sometimes has to have a catherter in to help him go to the
toilet. he seems to always have back pain even on good days he always
moans about his legs they are always hurting him. its so heartbreaking
to see a 15 year old boy who was very active did all sports cant do a
lot i do hope and pray that some day the carers of these people get
some sort of help and some answers. All i seem to get are we dont know
how long its going to take for him to get better or what caused this he
wasnt even ill when he couldnt go to the toilet they first put it down
to drug abuse i new then my son had never touched drugs i made them do
a drugs test which obviously came back negetive. But on the good side
my son is back at school tomm full time but still very much in pain and
weak but we will take every day as it comes i would like to wish all
the sufferes well and i really do hope you all get sme answers im sorry
i cant help and i just hope there light at the end of the tunnel
somewere and im hoping one day i find it with you . thank you for
reading jane x

[Fann...@aol.com]

Hi Jane:

 

My name is Rhonda I live in FL. My mother woke up with back pain one morning and was completely paralyzed from the waste down. They did an MRI and she had a lesion on her spine that was from T2 to T9.  They said she had transverse Myelitis.  You should talk to your Doctor about IVIG treatment or plasmapheresis.  Did your son have an infection prior to getting this.  It is usually cause by some type of virus, such as shingles, bronchitis, or any type of viral infection.  If your son does not have a bad case of it (though I know it seems bad it really can be much worse.)  the IVIG treatment or plasmapheresis should have good results. Unfortunely you are going to be very frustrated and find out that most doctors simply dont have a clue. They rarely see people with this they only know what they read about it.  If you can, send your sons medical records to the Mayo clinic as they are very in the know about this autoimmune disease.  I am so sorry you are going through this, but keep your head up.  My mom had a severe case and they could not figure out how she got it or how to treat hers. We think she had something much worse than just the Transverse Myelitis as when she was younger she was paralyzed with Guillone Barre Syndrome which they felt may have contributed to her bad episode.  If he has not had the IVIG treatment or plasmapheresis I would demand it.  If your son is able to walk and go to school I really think this treatment would work for him from what I have heard from the Doctors we had gone to. Please let me know how things work out.

 

Rhonda Matienzo

 

In a message dated 9/5/2006 10:37:59 A.M. Eastern Standard Time, tweetyp...@aol.com writes:

kidneys he sometimes has to have a catherter in to help him go to the
toilet. he seems to always have back pain even on good days he always
moans about his legs they are always hurting him. its so heartbreaking
to see a 15 year old boy who was very active did all sports cant do a
lot i do hope and pray that some day the carers of these people get
some sort of help and some answers. All i seem to get are we dont know
how long its going to take for him to get better or what caused this he
wasnt even ill when he couldnt go to the toilet they first put it down
to drug abuse i new then my son had never touched drugs i made them do
a drugs test which obviously came back negetive. But on the good side
my son is back at school tomm full time but still very much in pain and
weak but we will take every day as it comes i would like to wish all
the sufferes well and i really do hope you all get sme answers im sorry
i cant help and i just hope there light at the end of the tunnel
somewere and im hoping one day i find it with you . thank you for
reading jane x

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