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Transverse Myelitis or... ?
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LightningCrashes posted:
Hey everyone:

Long time... I know

I hope everyone is doing okay!

I already asked this over at Braintalk and I thought it would be over and done with by now, thought i'd stop by here and say hi anyway. And now I find I'm gonna ask about this because it's bugging me again.

OK, so here goes. When I was pregnant, I had about a week and a half worth of trouble with my sciatic nerve. MY OB told me it was clear that it was it was and not to worry. It hurt like all get out and I was scared b/c a woman in my MS support group had Transverse Myelitis in the past and she said it sounded just like it. Still, mine resolved just like the OB said and I never thought of it again.

Of course, I've heard of it thru the years (I know Beth has had this and a few others)... Oh Beth if you're around, please pipe in!!!!

So anyways, I guess about a week ago (?).... I'm laying in bed with my daughter (she's asleep), I'm just laying here and she kicks me. I try not to fall off the bed, so I put down my left leg in a jerking motion. My leg hits the floor hard (and stops me from falling). No big deal, I get back on the bed, I get comfy and we nap. Later, I go to the bathroom and (I forget how I moved), but notice this awful pain in the small of my back (tailbone area?). It has been there ever since, in varying degrees of 1-10 pain.

I did get panicky. I looked up TM. So, what I *don't* have is tingling, numbness, I am *not dragging my leg.

I *have* had a headache off and on, and I *do* have a lack of appetite (but that's pretty normal for me, I'm never hungry and a very picky eater, when I *do* eat).

The pain radiates down my left leg, and it hurts more when I bend down my head (like tucking chin to chest) and when I round my arms forward (like to make a hug)-Great! my kids love to hug!

Also hurts -like if I "shrug". Most of these things I notice because I do them as part of my warmup exercises. It does NOT hurt if I arch backward or bend side to side.

Sooooo... I do have a chiropractor appt on Thu., but am wondering if I should be calling my neuro for MRI yet.

Anyo9ne here have TM? Does this sound like TM? or more like the sciatic thing? (it sure does feel like the sciatic thing I had when I was pregnant, but that was 8 yrs ago!)

And yes, I am feeling a little creeped out because the MS has been leaving me be for the most part.. I don't take MS meds. I am kinda mortified about having the kind of relapse of TM proportions because what on earth could they do for me in THAT case???? Geeesh I can't even take the CRAB stuff or even the distant cousins... I've just been sitting here wishing and hoping something comes of that CCSVI.*sigh*

Any thoughts or experiences you can share will help!

Thanks!

Healing Hugs

Maria
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swampster1952 responded:
Good morning Maria,

Where you been girl? How are you kids doing, your husband? I am happy to hear that your MS has been leaving you alone.

I have never had TM so I can't be of any help to you. I hope you don't have it though, it is a rotten thing to have. MS is enough of a bother!

Take care,

Dave
 
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hackwriter responded:
Maria,

I have MS, not TM, but I'm battling sciatica myself right now, and your symptoms sound to me like you've aggravated the sciatic nerve again, especially in light of your awkward position getting out of bed, or trying to keep from falling off the bed.

Just my two cents.

Kim
 
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LightningCrashes responded:
Hi Kim:

I also have MS... dx'd in 2000 (trying to get a dx since 96). It does feel exactly like the sciatic thing i had when I was pregnant. Still, I just get so scared because I know that TM can be a nasty little stowaway that can rear it's ugly head sometimes with MS.

I wish I were a lot better educated on it that I am, since I know some of my friends here and over at Braintalk have had it, but I am not as well-versed as I would like to be. I have gone online and read all there is on NINDS and Mayo and here and there... Of course, as you probably know everything on TM comes back "not pretty".

I suppose the "good news" is that , as of now, I have none of the other sx's that seem to accompany the TM. And, I agree with you, it is presenting almost identical to last time with the sciatic thing.

I just hope it goes away as fast as it came and went last time. Pity, this time I don't get the bonus I got at the end... LOL. Nope, I'm NOT saying I want another kid...

Thanks for chiming in!

{{{{{Healing Hugs}}}} xoxoxo
 
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funfearlessfemale2 responded:


Maria I figured out how to get on!

hello everyone! Loooooong time no see.....hope everyone is doing well here.....

you're going to chiro Thurs, I would see if he "sees" anything going on.....I haven't had TM but I have disc issues and I know the pain shoots down my legs....and you mentioned the tailbone area so I curious to see what the chiro says.....

HUGS!!!!
 
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funfearlessfemale2 responded:
It's Brooke by the way guys.....didn't put my name there.....
 
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AL0728 responded:
Hi Maria,

I was Dx with TM before I got my MS Dx.

At the time I was Dx with TM, the left half of my body was totally numb. It lasted almost a month. My understanding at the time was TM was a large lesion on my spine that spanned the width of my spine. (Lesion was very large)

I still have sciatic nerve pain, but MRI's show no degeneration of my spine. Still have remnants of the original large lesion though. They told me I will most likely always have this pain. Neurontin helps some with this.

A lot of what you mention sounds familiar to me, especially the "shrugging" pain, hugging pain, headaches and loss of appetite. In fact, my weight fluctuates with no rhyme or reason sometimes. I don't really change my eating habits, but I will lose like 20 lbs., then gain it back. I have told my doctors, but they think I have a nervous condition. I never thought I was particularly nervous, but if I am upset, I cannot eat.

I never got a bad prognosis from TM, except that the Sx it produced would probably not go away.

I hope this helps, some. Please share your research with TM. Is their something I should be worried about?

AL
 
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LightningCrashes responded:
Hi Al!

It's good to "see" you!

I am actually a teeny bit better today. I have my appt with the chiropractor tomorrow and I am anxious to hear what he has to say...

I have done a lot of online and book reading about TM. I have read up on a lot of the sx's. and I seem to only fit the pain and headache part, so far

That said, because I have MS and know several friends that developed TM after being dx'd with MS, I am afraid and I *do* tend to get panicky. I can confess that with no problem

The appetite thing for me is not new or unusual. I have always been that way and then a couple years ago I got myself into that awful clinical trial that messed up my tummy real bad and I got down to a size "0". Not nice. I have since managed to put some of that weight back on, but my already temperamental tummy became even more so and I just stayed small and things don't go into my stomach in a very cooperative way.

Anyways, I do not have any numbness or tingling at all and I have not had any clumsiness of the left leg or arm, etc. The pain seems to increase when I do things to "trigger" it (does that make sense?). I exercise every day and even since it started to hurt, I have still been able to do so, just that certain things make it hurt more. Like the shoulder rollls when I'm warming up (that's what I call the "shrug") or when I open up my arms wide and then go to close to make a hug. Kinda like a cat arching it's back forward. However... I can arch backward.. way back (like you do in ballet class) and it's fine..(not that I would expect you to have done any ballet warmups LOL!!!)

Hmmmm... The last MRIs I've had (I always insist on the FULL thing) all the way down... have never shown any activity anywhere other than my brain. I'm probably going to give my neuro a call to set up an MRI (I need to have one anyway) and then we'll really see what we see!

Thank you so much for replying. I will definitely share with you what I find out. One article I did read says that TM can torture you once and then leave you alone (I hope that's the case for you, my friend). Ahhh, the mysteries of MS and it's "cousins". I wish it would just GO AWAY!!!!

Hope this is a good day for you!

{{{{{Healing Hugs}}}}}

Maria


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