Do others with TM have any similarities to me?

[megmerchant]

I have been to my neurologist and was told I have Transverse Myelitis. This DX was given to me 1 year ago after the birth of my youngest daughter, after 20+ years of pain. I am only 25 years old, but have been dealing with this pain since I was old enough to talk.
My parents took me to numerous specialist, chiropractors and childrens hospitals including Shriners, who all said my back looked as if I had been in a car accident....but said there was no treatment because they didn't know what caused it or when, and bc of my age.
My mom said as a kid I would always be moving my head around as if I was trying to crack my neck, and that's something I still do to this day. I am not actually trying to crack my neck, but I'm in so much pain that I feel like if I move my head around and slowly stretch it, it will feel better. It doesn't....but holding my head in the position it should be in is excruciating!
The older I got the more I wanted answers. I Went to numerous specialist who said everything from Poss. MS, Poss. Lupus, Spinal Stenosis to regular bulging discs. After I had my daughter Via c-section it became suddenly and increasingly worse. Finally found a doctor who did a whole body MRI because she thought it had something to do with the Spinal I had done for my c-section.

Instantly after they got the report my neuro recanted that statement and I was DX'd with Transverse Myelitis and put on 5 days of IV steroid treatments. After the first day the pain in my neck subsided and I realized how much pain I was really in all those years. I could move my head freely and was headache free! Even though I was having a rough time getting used to the Methylprednisone, those 4 days of being pain free were the best days of my life.

Unfortunately for me though, the day after my treatments stopped all the pain returned. I was ordered to do physical therapy and completed half of it when I had some other unrelated health issues that I had to attend to. I am waiting to see my neuro again, but it's a 4 month wait and I still have 45 days left until my appointment.

My neck causes constant pain and it travels down the right side of my neck straight down to my right shoulder blade. My head is permanently tilted to the left, and even though it isn't noticeable to most people unless I mention it, you can see it plain as day on all my MRI's.

I experience headaches, chronic pain, numbness and tingling in my arms and legs. Even pain meds don't ease the pain at all. Nor do muscle relaxers, stretching, or anti inflammatory meds. The numbness sometimes comes on quickly and it's scary because I never know if I will get the feeling back.Luckily it has never lasted more than a few hours.

At times it can be challenging just to get out of bed in the morning, but I have 3 beautiful little ones who make it all worth while!! After researching Transverse Myelitis more in detail, I've come to understand that it can actually be an auto immune disease. In my case I am pretty sure that's what's happening. Now that I look back on how the IV Steroids only helped while I was taking them, it seems thats a clear sign of auto immune? Let's face it, I am only 25 yrs old....I shouldn't feel like I'm 80. From what I've read, it is VERY rare to have true idiopathic TM...and the outlook isn't so lovely.
I'm a little worried because I don't know what my prognosis is. I've always thought "OK, one day you will find a doctor who will take you seriously and they will find out what's causing this pain. Then we can treat it and I'll be better!". Guess that was me being naive :/ MS was ruled out with a LP, and all the crazy lab work they did came back ok. But I've also heard numerous stories about people who've had MS and it took years for their lesions to show up on an MRI....or there LP was negative the first time and then at some point it was repeated and came back positive.

I guess I am just looking for someone who maybe has a similar story to mine, or has any advice/input on either my condition or what I could expect in the future. Curious to see what my neuro is going to do at my upcoming appointment, as they already said they don't think returning to physical therapy is going to help me much. I'm sure I have forgotten some details, so if you would like more info just ask away! Wishing Health and Wellness to everyone!! That is what I want to achieve.....I just want to finally feel "well".

[22cyclist]

Megmerchant: TM can be a part of MS, it can also be a part of CIS (clinically isolated syndrome) if the circumstances are right. What you are explaining, however, sounds like you just have TM.

When you have a whole body scan, which I am sure contained a head MRI, they would have noticed lesions in your brain if you had MS. So you have this one lesion on your spine that is causing trouble. Your history is of just this problem, and pain. This is not typical of MS. Your numbness also only lasts for one hour or so. In MS, your numbness has to last for >24 hours to be considered an exacerbation and therefore a true symptom of MS when diagnosing someone.

Another thing is that you did not respond to the steroids the way MSer's do. IVSM stays in our system for about 3-6 weeks. Although you may feel a drop off after the steroids, they still provide relief for that 4 week period, it doesn't stop that day in most cases.

Perhaps you need another appointment with this neurologist considering how much pain you are in so you guys can come up with another plan.

However, I agree with your neuro, sounds like TM alone at this point. Just keep track of your symptoms and if they become more worrisome and long lasting, go back for more testing.

Best of luck and I truly hope you feel better. TM is the worst!
I have a MS friend who got it a couple of years into her Dx.

Take care
Lisa
Moderation Team

[fishead]

megmerchant,

Gosh I am sorry you have that pain. I hope the pain can be dealt with effectively

[MSer102]

TM can also be part of Devic's disease now called NMO. Its a different disease than MS and has to be treated differently after steroids. When I was studying up on NMO when my doctor thought I had it I found out what you did that its now pretty rare for there to be TM without a cause. A lot of what used to be thought of as TM without a cause turned out to be NMO. So maybe your neuro should check you for NMO too or send you for another opinion with a doctor who knows about it.

[Grace53a]

Hello,

Re: TM (Transverse Myelitis). There are two uses for that word. There is TM which is it's *own* disease. The term is also used as a *descriptive* term. In the case of TM within the context of another underlying disease pathology (ADEM, NMO, CNS Lupus, CNS Sjogren's, MS, Neurosarcodosis, Vasculitis, etc.), the term TM is used as a *descriptive term only. In NMO (which I have), TM is one of the two absolute criteria. That being said, my diagnosis is NMO and not a dual diagnosis of NMO and TM.

Grace (NMO+ since 2005)

[Misstiegan]

I've been seeing a ms specialist for a couple months and having so many tests done. The neuro says its either MS or TM. He also mention possible idiopathic TM.

I have a ton of symptoms. Spams, lock ups, convultions, and lots of pain! Back in april/may i went from walking to Being dependent on a wheelchair. Really scarry and frustrating with no answers! I'm waiting on results of a lumbar puncture and uro testing. I hope they find answers soon!

Good luck with your situation! I hope you get more answers too!

[rdmc]

So sorry to hear about your pain...do you take symptomatic meds for the pain?

I don't have TM, so I am not familiar with it's symptoms, but as to the neck tilting and the pain, have you ever seen a movement disorder dr.

Google spasmodic torticollis or cervical dystonia (different names for the same condition.). It just sounded like your symptoms were very similar and although dystonia and movement disorders can be secondary to MS (not sure about TM) they can also be a issue for non MSers.

I hope you can find some relief from the pain no matter what the cause.