Limbo Update - More Confused

[Kaitar]

Saw neuro yesterday. Dx transverse myelitis (mild form multiple vertebra). I am on oral steroids and have MRI of spine (cervical and thoracic) March 26th.

Still numb and wondering what all this could mean. Avoiding Dr. Google b/c all information on transverse myelitis seems WAY worse than what I have right now.

Anyone with experience, please share!

Thanks!

[sm1bentley]

Hi Kaitar....I too was diagnosed with TM because they only found one lesion at the time I had my first symptoms. They started me on steroids, I went on STD for 3 months and continued to be tested for just about everything under the sun. For just over a year I held that TM diagnosis until I had a relapse of symptoms and the new MRI showed 4 new lesions. That was when they finally had enough evidence to officially diagnosed me with MS. (this is NOT to say your TM will turn to MS). My Neuro told me that TM tends to be a "catch all" diagnosis while they continue testing and wait to see how your symptoms progress.

Just like MS, TM can effect people in many different ways. Everybody's TM is going to be different...at least that is what I learned from doing those "google" searches. Please do your research but dont let yourself get freaked out by the "worst case scenarios"...and you will find too many to count.

Hopefully you will get more answers at your upcoming appt. The diagnosis process can be a long one. Keep your spirits up, get plenty of rest, and use this forum to vent and ask questions

[22cyclist]

While nothing can explain it better than personal experience, here are some facts about the disease:

http://www.ninds.nih.gov/disorders/t..._any_treatment

It doesn't always turn into MS. However, sometimes it does. So its best to keep an eye on your symptoms. If the IV or By mouth steroids do not make your symptoms completely go away, or they come back in a couple of months, then it is time to see your neurologist again. I hope you continue to feel better with the steroids you have received, and everything clicks along as normal.

The other thing you have to watch for is NMO or neuromylitis optica. TM sometimes leads to that diagnosis. It is similar to MS, but totally different in the way it is treated. So you need a good neuro who knows his stuff, and a neuro-ophthalmologist that knows his/her stuff too.

Take care of yourself and welcome to the boards. You will find lots of help here. Please keep us posted as to which category you end up in, if any at all.

Take care
Lisa

[Kaitar]

Steroids

Thanks for the replies!

I am only on a taper dose of steroids, nothing high dose. I have deficient Vit. D and they are mega dosing me with D and steroids block D so since I am not "bad" only a little help from steroids.

This has me pretty paranoid because it seems this can get WAY worse than what I am experiencing. My hands, arms, underarms, chest and upper back are numb, tingling and not good a feeling in general, but I have no leg involvement or bowel or bladder. My back is a very active spasm most of the time, but that's it.

I was told by neuro if eyesight becomes an issue to go to ER and get IV solumedrol started.

I really hate the "let's see if it will fix itself" approach. There doesn't seem to be much information on this transverse myelitis unless it's a serious case. I wonder if that's because it's just the "holding" dx as you guys have mentioned. More a description then a dx.

[sm1bentley]

I had the exact same symptoms....confined mostly to my chest, back, arms and hands. I was also extremely vitamin D and B12 deficient. My Neuro told me he felt confident that I would have an eventual MS diagnosis but as I said in my previous post, it took over a year. I never fully recovered my arms and hands.

Like Lisa said...your diagnosis and/symptoms could change so be armed and ready with as much knowledge as possible about similar/related diseases....and get a team of doctors you trust!

YES...the whole "wait and see" aspect really sucks but that seems to be the nature of the demyliting diseases. Something happens (like lesions), you wait to recover....you do too much, you wait to recover. Its like you are always waiting to see what may be next.

My diagnosis is still very new (5 months) so I am working on not letting my head get too much into it...worrying too much about what I cant control...the future will be whatever it will be....sounds good as I type it but still trying to get my head and heart to commit to it...LOL

Please let us know how things go after your MRI....I will be hoping the best for you.

[Kaitar]

Thanks!

Thanks for sharing. Am glad to hear of someone with similar symptoms, even if they never resolved. I am trying to avoid thinking about living without all the feeling in my hands. I frankly don't care about the chest/back/arms. I am a chemist however and need my hands for my job. I've been working around it for the last couple of weeks, but there are things I can't do now. If it doesn't get better I very well may be forced into a career change.

I have never been good at waiting. I'm a worrier. I am doing my best to be patient and hopeful while at the same time learning, preparing and trying to keep realistic expectations. I am of course taking my new vitamins and hoping that fixing the nutritional aspect will help.

Sm1bentley, you seem pretty well adjusted with your diagnosis. I will share that when my sis was diagnosed they said she wouldn't be walking within a year or two. It's seven years now and she walks most days unaided.

No one can predict the future.

[sm1bentley]

Kaitar, I remembered that your MRI was for today....Hope everything goes well.

[Kaitar]

Thanks - hopeful for answers

Thanks Bentley, I am seeing the neuro directly after and I will give an update tonight.

[lavenderteawithme_33]

May you find out answers. Good luck today.

[Kaitar]

Update - C spine and t-spine MRI

Okay, one rather substantial lesion at the C-2. Definately too small for NMO. Neuro very convinced is MS. Go for brain on April 3rd to confirm.

At this time, Neuro says, most likely MS, start to choose DMD.

[sm1bentley]

Well I am sorry that its looking like you may be joining the MS team but at least you have been asking questions on here and getting educated.

My first lesion was at C2 also...my symptoms were almost identical as yours. Took a year and a half before more lesions showed up and I got my offical diagnosis and started my dmds...but my neuro was sure right from the beginning that MS would eventually be diagnosed.

Am I remembering correctly that your sister has MS? If so, then at least you have someone to get through this with.

How are you feeling about it? I know you were kind of thinking it might be but its different when a doctor pretty much confirms it. Hope you are ok.

[Kaitar]

Am Okay

Thanks Bentley. Yes, sister has PPMS so neuro is maybe more aggressive than usual. Believes c2 lesion is "classic" and told me if any are in brain (new or old) wants me on a DMD. Does not want to wait for another flair/flare (sp?).

I am doing okay, kinda already figured. Saw the MRI myself and knew the moment it came in view.

I have scheduled a small emotional breakdown for saturday. lol