Welcome Lauri, Michelle, Doxiemama, and all I've missed recently up here in the "newby" thread! I'm sorry for all the carpy reasons you have to find us, but glad you found us..If you need comfort, information, opinions, or just a relaxing place to have fun, this is the perfect spot..Again:

welcome everyone,

i'm sorry for the reasons you're all here but glad you found us.
all we can do is our best and take one day at a time.

i hope we hear more from all of you.
thanks for your intro's.

Welcome!

This is a supportive, caring group of people. The best and welcome to the family.

Aw..I forgot this was up here! So I am short!

Anyhoo! Welcome to all the new people! Glad you are here!

I'm one of the "Slowbees"! My apologies for not coming in sooner and my welcomes are piled on top of all the others!

Sorry you all have to be here, but glad you found us! Jump right in and make yourselves at home! There's LOTS of info available here and if you need help, just holler and someone will jump in and set you on the right course!

Hi and welcome!

I look forward to reading more from each of you. Hope you are well today. Jules

Hey Newbies - jump right in. If you see a thread you like, post. If you have questions ask in your own thread. I've learned more here than from MS specialist Neuros. When you have MS you really understand.

hello Doxie, welcome to the club, thanks for your post on the Wheel chair thread

hello i will introduce myself to all those her that dont know me.


in feb 06 i woke up one ay with fire from the waist down , within the next five days i had lost the ability to pee , deficate, i had the is enourmous back pain that was unbearable, then i couldnt walk.

flash back a few years to mid 96 i started to get very fatigued at work, and noticced pins and neeedles in my thighs but thought this was work related because my job was a very physical one. but recognised the symptoms as my youger brother had alread been dxd with ms and had simaler affects.


i spent the better part of a month in the hospitla with every specialist in the area looking at me and figuring things out. but i had made it a point to get an lp and do mris at the time of the flare or whatever it is.

the lps came up positive for ms with over five bands on thier scale. six months later i had anothe rlp it was positive with two bands.

so far all my mris have been cler. but was dxd with ms by a nurologist and did the avonex for a year.

then out of the blue the same nurologist said never mind your mris are clear thereore you dont have ms but instead you have transversemyelitis. his superiors came to the same conclusion and the so called ms specialist in sf tlaked with me for five minutes did a review of my reords and said no ms. what an ****.

here it is almost three years later. thighs still getting electric shocks, legs and feet go hot and cold, i have continual back pain. get foggy, slur my speaech when rushing it, im very fatigued all the time and take power naps which actually keep me up a good portion of the day. with insomnia. wwhen i do sleep heavy i wake up in pian and never sleep over three hours without the use of ambien.

my medications include,

morphine- 15 mg 3x daily
percocet- 325 mg as needed for breakthrough pain.
gaperpentin 3x300 3 x daily used to be 4x300 3 times daily
vitamin b-12 100mg daily
lisonopril- 20 mg once daily
simvastatin- 40 mg onece daily
hydroclorothiazied 25 mg once daily
prozac once daily
and a stool softener because of pain meds.


before i got sick in 2006 i wouldnt even take an asprin for a headace id usually just tough through it.


i believe my symptoms were cause d by traumatic shock from a nose breaking three weeks erlier and then a bad cough that lasted a week aster that. the night before my symptoms started i had a cough attack that lasted almost an hour that was so heavey i thought i thre out my back.



i am 45 years old a retired chef, a geeek since 1977 and enjoy my time with my computers and cars. i mamarried for 12 years now and have been unemployed since i got sick. it took me almost two yers to get back to 75 percent stregnth in my body. i have a service dog jake which is a queensland heeler who almost never leaves my side.


i serverd in the airforce from 82-86 and was raised in the navy.


thanks for reading.


roger.

Hi again Roger, and thanks for the introduction.

Have you had a chance to read this thread yet?:

http://neurotalk.psychcentral.com/sh...verse+myelitis

There aren't too many of us (FORTUNATELY!!) who've had the pleasure of a severe TM attack, but I know how difficult this last two years will have been for you.

TM can be a stand alone dx, either caused by an underlying condition like MS, lupus, etc., or even idiopathic. I understand why they are reserving the MS dx at this point, if no lesions are showing in your brain yet, but the writing is probably on the wall if your bro' has MS.

I waited 12 yrs after my first TM attack, before getting a MRI of the brain (obviously I had spinal lesions) ... but I didn't see any point in knowing if there was no treatments available. Even now, my doctors don't recommend any of the mainstream meds because they haven't proven effective for mostly spinal lesion activity.

When I had a second TM attack, which is HIGHLY unusual, they finally saw 3 small brain lesions. Even if they hadn't found the 3 lesions I probably would have been dx with MS, because I had "dissemination in time and space" by that point . . . but the 3 brain lesions made the dx a slam dunk.

TM can leave us with a lot of unresolved symptoms, and seems to continue to do it's damage long after the event too. For that reason it can be hard to "notice" when the "new" symptoms they may be 'waiting for' crop up (that aren't related to the original TM attack) . . . The "defining" event for you will likely either be a 3 - 4 week period of completely new symptoms (i.e. a clear "MS" attack), another TM attack, or new spinal lesion activity (symptoms) that goes further up the body (making it obvious that a new spinal lesion is flaring). Alternatively, it will likely just take TIME before the brain lesions show up on their own.

Since my doctors were not keen on putting me on the CRABs, even after the brain lesions showed up, I searched the internet for alternatives. In the end I got on LDN, and it has been a life-saver for me. Based on the number of pills you are popping now , combined with the delayed dx (and treatment options), I would suggest you give LDN try!

Cherie