[NurseNancy]

hi kelly,

welcome to NT. it sounds like you've had a rough time & i'm sorry you're flaring. i hope the roids work.

i've been on copaxone for 10 yrs and have done well on it.
true it's daily shots but it's not IM & you don't get flu like sx's on it.
the shots become routine. the RN will come to your home & teach you how to do them.

the best advice i can give you looking back on my experience is to take 1 day at a time. try not to look ahead because no one can predict the future, not even healthy folks.

and, be gentle with yourself. listen to your body and don't overdo if you don't have to. pace yourself so you can conserve your energy to do things that have to be done.

congrats on your baby too.

[bknejones]

Thank you everyone for all of the great advise, I am SO happy to have found a place to talk to people I can relate to. I have a wonderful and very supportive family but when it comes to all of this MS stuff it's hard to talk to them about it because none of us know anything about it! lol

And I was completely wrong as to when this flare up started, it's been almost 3 months now. I called my neurologist office 4 times today in hopes of starting the 5 days of IV solu-medrol this week, since I've been living with this pain and all other symptoms for so long, but they didn't call me back. I just want to feel better!

I am very sorry my little rant.

[NoWakes]

Hi,

I am a 47 yr old woman. I've been having the odd symptoms all of my life. Being a busy person, I ignored a lot. A big "symptom" was at the 32 I lost the use of my right leg..it just stopped working for a couple of weeks. We had no insurance, I went to the urgi, but they did no scans. They thought it was anxiety and sent me on my way. I did get it going again though. A disability center loaned me a walker and somehow I got thru. I always have had times of weird vision problems and eye pains that glasses wouldn't help and opthamologists couldn't fix. Sometimes they would rx prednisone drops, sometimes not. I finally stopped looking for answers. Occasionally my closet would hide a bag of depends adult diapers.

3 years ago I had a major complex surgery and all hell broke loose. The tingles, the shakes, the burns. My face would go numb. The pain up and down my body. I couldn't handle the heat, I wouldn't even leave my air conditioned home in the summers. I started taking cool showers. I thought it was menopause. People attribute all bad stuff to menopause.

I took a few falls. Suddenly my daily beach walks had become treacherous. Stairs were a jungle. Handles became my best friends. And then I'd be fine for a few weeks. Finally my gp did the "follow my fingers" test, and then puzzled a bunch of neuro tests. And a neuro consult. 2 clear MRI's. Puzzling labs with inflammatory markers extremely high.

Optic Neuritis. Wow. Scary crap. Almost completely blind in one eye. Now they've got my attention.

I just started a 5 day IV prednisone dose.

How can it be MS with clear MRI's though? The doc's say they are pretty sure. (oh the lumbar puncture was positive?) I go to a clinic in Boston.

[Erika]

Hello NoWakes,

Welcome to NT.
Sorry that you are going through this...the road to diagnosis can be a rough one .
It is usually best to take one day at a time and listen to what your body... as well as to what the docs have to say.

It is quite possible to have MS and a clear MRI; especially if an MRI was not done of the spine. Even then, some spinal lesions do not show up either.
It sounds like you are in good hands with your doctors so far though.
It seems that they have run some of the tests to exclude other possibilities and have chosen to use a strong anti-inflammatory to get things under control ASAP.

From there it might be a bit of a wait and see approach. Please let us know how you are making out with the prednisone and how things go afterward.

With love, Erika

[SallyC]

Welcome home NoWakes. Sounds like you've had this carp for a long time..me too. I was mild n the beginning, but like you said, all hell broke lose.

I hope you are going to stay with us and let us know how it's going. Join us in our misery and fun..

[Nimrodel]

Hi,

I'm a 19 year old woman who's been having episodes of transverse myelitis in addition to other symptoms for the last six years. In 07, when I had just turned 13, I got acutely ill with the textbook TM: muscle spasms, progressing paralysis, binding pain, hyperreflexia etc. At the ER they dx'd me as Acute Idiopathic Transverse Myelitis and treated me with two weeks of IV steroids (after the first week symptoms returned so they re-hospitalized me for a second round). A slow and bumpy recovery ensued. Since then, I have had relapses (less severe) of TM as well as misc other neurological symptoms - sensory changes as well as severe shortness of breath caused by spasticity of the abdominal wall muscles and perhaps mild diaphragm weakness. Currently taking a round of 'roids for my latest TM relapse. Stickler: I have absolutely normal tests. MRI's w/o contrast of brain & spin; CSF; even an evoked potential. Every blood test available, including NMO IgG. Everything completely normal. At first neuros thought I was crazy, but now (after the history and objective neuro findings) they just don't know. Was seen at the UCSF MS Center who, on first visit, thought I had MS but after normal tests did not know. Current neuro is waiting for some confirmation before dx'ing MS: positive brain or spinal MRI or, he says, solid evidence that the disease was involving some other spot in my CNS and not just a specific band of spinal cord. Whew! There's the tirade. Sorry for all that babbling! Just really wondering if anyone has experienced anything like this - spinal-only MS and/or clear MRI's?

Thanks! And wishing everybody a peaceful and healthful neuro system in this new year!

[Erika]

Hello Nimrodel and welcome to NT.

I'm so sorry that you are going through the "nasties" of Transverse Myelitis.

Quote: Just really wondering if anyone has experienced anything like this - spinal-only MS and/or clear MRI's?

Some people do develop symptoms of MS while the MRIs and other tests remain clear...at least for a while. It seems that some lesions take time to show up (especially in the spine); and/or some MRI Tesla strengths may not be strong enough to show small lesions.

It may take a while for the docs to figure out if you are dealing with TM, partial TM, and/or MS; so please try to be patient and most of all, be kind to yourself. The road to diagnosis for MS is often a long one...as it is often a process of elimination.
The sensory changes, pain, spasticity and even the shortness of breath (due to abdominal muscle spasticity known as 'the Hug'), can all occur with MS; but there are usually some other findings on tests that indicate MS rather than TM.

At least so far, it seems that your tests have consistently been clear for MS, but then again, some of the symptoms of TM might not be classic enough for your docs to arrive at that exclusive diagnosis either. They might settle on a diagnosis of Partial Transverse Myelitis, at least until some lesions show up on MRI.

I have experienced MS bouts and partial TM episodes, both separately and together; but I had MS symptoms (optic neuritis, lower limb spasticity, pain and tingling) before my first TM episode. My partial TM experiences have been more like what you describe; although there was also ascending spastic paralysis that affected the legs with the more severe bouts of partial TM.

Sorry but I can't say what would have shown up on MRI in the early stages once I had gone through a couple of MS and TM bouts; as MRI was not available/used back then (circa 1978-1988). Now after 35 years of dealing with these neurological disorders, there most certainly are lesions in the brain, as well changes in the spine that show up on MRI.

It sounds like your docs are doing their best to get your symptoms under control while they figure out what is going on. Hopefully they will find out the 'why' this is happening to you and will then be able to offer something to prevent it from happening again.
I'm not sure if the disease modifying drugs (DMDs) that are used for MS work on TM, or if there is something that might work on both; but your docs would probably know that and might offer that option at some point.

Please keep us posted on how things are going with you. We are here to support you and hopefully some others here can/will offer some insight along the way as well .

With love, Erika

[NurseNancy]

hello nowakes and welcome to NT,

it can be possible to have MS and the lesions not show up for a while on mri.
but it does seem a bit odd since it sounds like you've had this for a while. and, if you're in an active flare the lesions should show up as active. odd.

did you have the mri with contrast? that shows the lesions better than without.
at least your drs are validating you and tx'ing you. i hope the roids help.
please keep in touch and let us know how you are.

[NurseNancy]

hi nimrodel and welcome to NT,

i don't know about your situation but wanted to say hello anyway.
others will be along to help too.

check out the other forums on the site as you may find some that will help you.

[Mary Sue]

Hi everyone

I am looking for advice and information. After 2 years and extensive work ups I finally got a tentative diagnosis this week. My neurologist thinks I have both Cervical spine stenosis and M. S. I will get the complete diagnosis on January 30th. She has already scheduled me to see a nuero-surgeon. I am not ready to just agree to surgery. I did that about two years ago when an orhtopedist told me I needed rotator cuff surgery and that would cure the pain in my upper back. Didn't work I still have as much pain and now I have substantial weakness. I am familiar with M.S. my Mother had it and I care for my daughter who has had it for about 29 years.

Any information on avoiding cervical spine surgery would be much appreciated.

Thanks,
Mary Sue