United Brachial Plexus Network, Inc.

Marieke,
I learn soooo much from you, "Nurse 2 Be". Thank You.

Mare, I'm stil "stormin'"....

Kath, I learned alot from your above osts too. thanks.

HUgs al around,
Carolyn J

Mare
Let's hope you can get some answers soon.
My daughter said you can call her if you need some questions answered. She has a very positive outlook on her condition and is very proactive about her care.

Kath robpi/adult

Ok just finished with the MRI with contrast of my thorica spine and the neuro called he spoke with the neurosurgeon and they want to get a spinal tap done I told him I want twilight sleep or something I have to lay flat and not move for 6 hours after boy am I gonna have to pee. I told him I wanted a definite diagnosis before they put me on any MS drugs. In 2006 they said I had Fibromaglia and was put on 2500mg a day of neurotin just to find out a year later I didn't have fibromaglia at all I had compressed nerves. I'm going to take a nap still tired from the valium and the strep throat
Hugs to everyone for helping me through this.
Mare

Ok got the rsults of the lower spine back and that is fine no lesions and everything is in alinement so now I have to wait for them to do the spinal tap and see the neurosurgeon on Tue. Mare

Neuro surgeon called he is not going to order the spinal tap he feels that if the MS doctor wants one after I see he on the 18th he will order it. He said he doesn't thinks its a tumor but doesn't thinks its really MS either since I have no signs and the buzzing I get when I tilt my head forward could be anything and since there are no brain lesions he doubts its MS but wants me to see the doctors to rule it out. The only thing that does point to the MS is the deterioration of the mylin sheath on my spinal cord. I thought a spinal Tap would say if you had MS I told him I was not taking any med with out being positive I have MS last time they couldn't give me a diagnosis they said it was Fibromialgia that was in 06 the MRI showed nothing as far as deterioration of the mylin so they said no to MS they both have the same symptoms except for that and fibro comes with stiff neck and headache and tingling which is what I have. I don;t know I just wish I had an answer. Anyway thanks for listening Mare

Dear Mare,
Hang on, Mare. Tie a knot at the end of your rope and hang on.You will get answers. Please do Vent here whenever you need to.

((((HUGS))))
Carolyn J

Well afer having the spinal tap and 3 MRI's the MS doctor said he is pretty sure it is Transverse myelitis but will due another MRI next month to see if the swelling in my spinal cord has gotten better or worse if worse its a tumor. That all I know so any info on how I got it or what will happen to me please let me know he seemed to think I had reached my peak and was on the way to recovery
Mare

Mare
Did he explain what you have to do to help recovery?
Kath robpi/adult

Mare,
If you have swelling now from the TM you need to be put on IV steroids (Solu-Medrol) or at the very least oral Predisone! The swelling doesn't just go away by itself quickly, it takes longer and can cause more damage in the process!
I am sending you a site that I suggest you look at and go back to your MD with the info provided... sending you home with nothing doesn't help you in the least.
Look at the Johns Hopkins site, print out the info and go see your MD! (neurologist I would hope).
I am in my 4th year of TM and if that is what you have you need info!
http://www.hopkinsneuro.org/tm/index.cfm
http://www.myelitis.org/index.html
http://www.myelitis.org/phpBB2/
I am a site moderator on the TMA board...

Marieke, 32 LOBPI and TM @ T1 since March 18th 2004

Marieke
Thanks for the info, I guess I said it wrong its not swelling but a widening of the cord with a lesion. The doctor I saw today is a neurologist thats speciality is MS he said since it started in Jan that it is a very mild case and my only problem is the tingling and numbness in my arms and that meds would do no good since it should start to go away soon he is going to do another MRI next month to make sure its not getting wider I think they don't want to use steroids since there still not 100% sure its not a tumor and steroids would make it grow. I guess for now I just have to wait and see if it goes away but the neuro oncology dept at University of PA is going to be looking at my MRI's and my spinal tap results this week and will either confirm what this doctors said or they will want to see me. Do you still have problems with the TM or did it go away??? This only happens once correct??