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Old 11-14-2003, 01:19 PM   #1
Junior Member
 
Join Date: Nov 2003
Location: Missouri
Posts: 15
frantickat HB User
Help with pain??? Transverse myelitis MS dilemma in detail

yay! My message finally posted, i've been trying for a few days to get it posted and it never
did. I thought maybe i'd go into better detail of everything now that i can stand sitting in
front of the computer for at least a little while.


I'm so glad to read that others have everything going on that i have. My doctors seem to think
i'm crazy, and i am trying to find a neurologist that is worth keeping but it's so hard to.
I am so absolutely frustrated i'm just ready for somebody to just shoot me and get it over with.


My myelitis in jan. 2003 i guess never went away, symptoms got a lot better and i could sort
of have a normal life. Until just a couple weeks ago symptoms came back, along with some new
ones. I've had bladder problems ever since january, nobody really knows what to do about that.
It's one bladder infectin right after the other, after i get done taking medicine for an infection
i got one right away, until just a few weeks ago it started hurting while i was still taking
the medicine, as if it wasn't even helping anymore. I've had lots of pee tests and the latest
one my reg. doctor said i had odd bacteria growing in there, not a normal bacteria for a bladder
infection but a weird one, nevertheless it was still an infection.


Doctors just shrug their shoulders and have mentioned going on a maintenance type bladder infection
control thing. Anyway, just recently i noticed my legs were getting the *heavy* feeling, and
feeling weak, and i was starting to get that aching/shooting pain in my neck, arms, and legs.
It felt like the symtptoms felt back in january. So i finally called a neurologist and got
an apointment with him the next day, by the next day the weakness/pain and everything had doubled
in worseness, so i knew that wasn't a good sign. SO i went to the neuro and he said that either
it was a reoccurance of the myelitis coming back, or i had MS, but he was partial to saying
i had ms because he said that not very many people have a reoccurance of transverse myelitis.
Also i asked him if it was normal to still have some symptpoms of myelitis after almost a year,
and he said no.


Not sure if thats trut though. But he wanted to put me in the hostpital and get my on steroids
and take more MRI's. I really hate hospitals, so he said wait a day and if it gets worse then
i could go in the next day. So i did, and the next day was definately worse. I started to feel
that odd, floaty sinky feeling where it feels like gravity sometimes doesn't apply to you.
It's so hard to describe. But i was definately feeling NOT normal, and the pain was getting
bad, and it was hard for me to walk, my legs were so heavy they didn't even feel like my own.
So in i went, to the hospital. Got on the steroid stuff for five days. They took an mri of
my head spine etc. and my brain came out fine, no lesions so i guess that ruled out MS. My
neck showed that i didn't have any inflammation, so there wasn't any myelitis there.


So the doctors just scratched their heads.

The pain increased everyday i was in the hospital, so bad i had to have morphine each day i
was there. (which was terribly hard to get out of the doctors, they didn't even want to give
me ANY pain medicine) It was a horrible experience, my neuro just frowned and said he didn't
understand why i was having pain. I really don't think he understood the basics of transverse
myelitis or he wouldn't have said that. But he felt that i should be feeling fine, and i definately
was not.


A couple more doctors on the neuro team came to see me, and sort of scratched their heads and
said HMMMMM also.



I couldn't beleive they had no solution..... I wish i knew more about all this junk so i could
try and figure it out myself. All i can think of is, maybe say i do have MS and the lesions
aren't showing for some reason on my brain? Or i have some weird strain of ms and they can't
tell yet. Or... that my myelitis did indeed come back and they just can't tell. Or this is
still left over from my episode in january.....


I really don't know, i'm not a doctor.

All i know is.... they sent me home from the hospital after the 5 day steroid treatment, which
didn't seem to do anything other thatn i could pee without hurting finally. And without hesitation,
usually it takes a while for me to go. So i'm thinking the steroids did help that.


A symptom that i have this time that i didn't have in january is this weird electrical buzzing
in my legs. My left side has been sensitive to hot and cold since january (meaniung if i go
out in the cold air my left side feels hot, if i go outside and it's hot my left side feels
cold) but i notice now that when i bounce my foot or leg on something i get this electrical
shooting throughout my leg and it feels sort of like a buzzing, like you have beat a hammer
on somethng metal and held it to my leg. It's mostly in my left leg but it's a little in my
right leg too.


I never had this before....this is a new one. And i've noticed that my balance is way way off
this time, it was off last time but i think it's worse this time. when i'm walking i'm very
dizzy and and when i do sit down it feels like gravity is pulling me to the chair like i can't
get up again. It's odd to describe.

The double vision and migraines are driving me crazy, it's usually in my right eye i can feel
it starting to hurt and soon i'll see double vision and get very dizzy and kind of sick to
my stomach, sometimes i'll see the room quaver a little out of the sides of my peripheral vision
too.


Mostly the problem is with pain and weakness. Does everyone have this? It's horrible, i'm feeling
like an invalid that's destined to lay on the couch forever. It's a deep ache that moves around
my body, sometimes it'll start in my neck and then travel down my arm and just ache and ache
and ache, so bad that i can't stop crying it hurts to bad. It also goes into my legs and lately
it's been in my hips and where my legs connect which is weird, i've never had it ache there
before. And the weakness... for the past week i've been home usually in the mornings after
i've slept a full 13 hours i can walk around a little bit. But then my legs get so weak, i've
found myself either falling over or losing balance or my legs totally giving out. I've been
dropping things too because my arms suddenly give out.


Also does anyone have sound distortions? I've been laying on the couch watching the tv on mute,
because sounds just sound unpleasant. Loud noises in particular. I'm so sick of being sick!!!
Focusing kind of makes me sick to my stomach so i haven't even been able to spend time on the
computer for more than 20 minutes at a time.


It's all driving me insane!!!! Nobody has any answers, and i'm just laying on the couch having
all these weird things happen to me and nobody knows why they're happening or how to fix it.
I want to just get up and pretend it's all okay but i can't......


Does anyone know anything about this? Why is it coming back? Did it ever go away in the first place?

Oh and yes, i did get rid of that neurologist, i really did not like him. I have an appointment
with a new one on tuesday so we'll see how that goes.

I don't know what to do about pain, the neuro gave me darvocet but that realy doesn't make
a dent in the pain i have. I've been taking motion sickness pills and it helps my balance a
little bit. Does anyone reccomend anything for pain? I want to ask my new neurologist about
it on tuesday but i don't know what's out there. I don't even know what's wrong with me.....


The hospital suggested a pain clinic. You'd think the hospital would do better than that, i
was in barnes jewish in st.louis and it's a very reputable place.... oh well. I was very disappinted.


Anyway. I've totally spilled all my guts out. I'm just frustrated, sick of being sick and laying
on the couch. I'm nineteen years old and want to get on with my life!!!!


If anyone has read this and has any suggestions. I would SOOOOO very much appreciate it. I'm
kind of alone with this and i really don't know what to do.


thanks,
vanessa

 
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Old 05-14-2004, 12:37 PM   #2
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Join Date: May 2004
Posts: 5
mcapps HB User
Re: Help with pain??? Transverse myelitis MS dilemma in detail

Hi There!

So sorry to hear what your going through. I got Transverse Myelitis just this March. I dont know if I can be of much help but quite a bit of it from the waist down is familiar to me. I am just now coming down off the steriods but I'm taking Trileptal 450 mg twice a day for pain. It does seem to help. I have been tested to death and they can find no reason as to why it feels as if my 'colon or bowels' hurt so bad. I feel like I'm sitting on a grape fruit all the time. At night it is rough. But what I wanted to tell you is my doctor prescribed what they call a 'tens unit' which I wear a lot of the time. It doesn't help 'cure' anything...but the electric impulses it throws out does seem to keep the brain from focusing on the pain. Before I got it all I could do was lay down all the time. That little unit gave me the ability to get up on my feet. You can rent them if you don't have insurance or your company wont pay for it. The pain pills they gave me didn't help me either. They just gave me headacks and made me feel worst. Laying around too much will make your headacks worst and will make you dizzy a lot when you try to stand. Well I don't know if this helped but its worth a try. Dont forget to pray cause if nobody else listens Jesus does and I'm praying for you on this end. Good luck and God Bless.

 
Old 06-08-2004, 04:31 AM   #3
Junior Member
 
Join Date: Apr 2003
Location: Pakistan
Posts: 43
Cheeti HB User
Re: Help with pain??? Transverse myelitis MS dilemma in detail

Hi
I was trying to find out some answers for my friends undiagnosed disease when i read your post. My friend is paralyzed waste down from the last three years but nothinghas been diagnosed yet in his case. We live in Pakistan, so my friend travelled all the way to USA(John hopkins, WD,and kansas), Uk and canada but doctors were unable to diagnose anything. They did plasma exchange on experimental basis.....................
Most of his symptoms were like your except he never had to face sever pain.............. but the same bladder and bowel problems, leg weakness etc.
He had all mylograms, X-rays, MRi's and other blood test but nothing was found in them. Just few spots in brain (whit matter) but its not MS than what it could be???? still struggling to find anything which can be treated.
What about You? did you get any diagnosis? really want to hear from you?
please do write soon.
Prayers

 
Old 01-17-2005, 05:40 PM   #4
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Join Date: May 2004
Posts: 5
mcapps HB User
Re: Help with pain??? Transverse myelitis MS dilemma in detail

I also had the tests but I dont think Transvers Myelitis shows up on their usual tests of MRI and X-Rays. I was given a spinal tap and though I'm not sure it even showed up there I was given a diagnosis of my condition. From what I've read they got it right. It sounds like your friend has the samething. It don't seem like theres a whole lot of medical professionals that know that Transverse Myelitis exists! Sad. The condition can be mild to crippling! If your friend does have the same condition and has been paralyzed for three years it sounds like he/she got the worst part. Look up Transverse Myelitis Associate on the internet and maybe they can help you with your friend. Good luck to you and God bless.

 
Old 03-05-2006, 08:13 AM   #5
Registered User
(female)
 
Join Date: Dec 2003
Posts: 183
jacritch HB User
Re: Help with pain??? Transverse myelitis MS dilemma in detail

Hi,

My husband has Transvers Myelitis. Last June he started having chest pains and went to the hospital. Within two hours he was paralyzed from the waist down. He went through two months of hospitals and rehab. He came home in a wheel chair and we had our house handicapped accessible. He was 44 at the time and very determined to get out of the wheel chair. He finally did after 4 months and is now walking w/a limp. He had a set back just a few weeks ago; legs burning and couldn't take it anymore. He went to the hospital and they ran all kinds of tests and said that nothing had changed since June of 05. They have ruled out MS. The steriods they gave him for 5 days seemed to help. He is walking a bit better. The doctor's don't have a clue as to why his legs were burning. They told him it wasn't a re-occurence. They doubled his baclofen when he was in the hospital.

I know that it is very frustrating for him. He was very active and loved life. He can't do some of the things he used to do, but he is trying to deal. He has a great attitude and just keeps plugging along. He did go back to work (he is a heavy equipment operator) in Nov. 05.

He is signing up for SS in case he needs it at some point. We have both come to terms w/ the fact that he may not be able to work until he retires.
It's sad because staying at home day after day stinks. Although, he does like to fish, so that will be an asset for him.

This disease is very frustrating and I don't think the doctor's know a whole lot about it.

Good luck to you all suffering from this!

Judy

 
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