got TM while pregnant with first child

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got TM while pregnant with first child

Postby brambles » Tue Jul 26, 2011 2:29 pm

Hi there,

I am posting this because I am wondering if anyone had an experience similar to mine? When I was 37 and 6 weeks pregnant, I got what was finally diagnosed as TM. I had never had any neurological symptoms before and was told it was probably the first onset of MS. They didn't MRI me or give me any treatment because of the pregnancy. My TM was what they call a mild case--didn't seem mild to me! (extensive numbness torso/legs/feet and strange sensations esp. legs and feet, urinary issues, legs felt heavy and uncoordinated). The TM had a "good" result in that I improved and have been left with just extensive numbness in the torso, legs and feet. I gave birth to a beautiful baby girl, who was healthy despite all of this (my terror was that this had affected her). After I gave birth I got the mri which confirmed a spinal lesion (the brain scan was clean, so no MS), at which point they diagnosed TM.

I'm now 39 and my husband is 46 and we can't decide whether or not to try for another kid. We're older, and my pregnancy was a terrifying experience with the TM (especially because I have an anxiety disorder). But, my daughter is 2 and amazing!! Also, nobody seems to know anything about what causes TM and I can't find any information as to whether or not this may happen again were I to become pregnant again. The TM onset right at the beginning of my pregnancy hardly seems like it could be coincidence and I know TM is autoimmune. I can't, however, even find another account of someone getting TM while they were already pregnant-- most of the posts ask about possbile pregnancies in folks who already had TM. Has anyone heard of this? Did it happen to anyone else? And, any thoughts on how I might get an answer as to possible reoccurence were I to become pregnant again? Thank you so much!!
brambles
 
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Re: got TM while pregnant with first child

Postby shanagan » Wed Jul 27, 2011 2:55 pm

Hi, nice to meet you. (under the circumstances & all ;))

I haven't read anything, anywhere about pregnancy being any kind of trigger for lesions. It seems that some of us deal w/the pseudo-relapses more than others (just like everything else about TM, it's a ymmv thing) but I'd bet money that you will suffer a pretty significant pseudo-relapse with the stress of pregnancy & hormonal changes and whatnot. The thing about the pr's is that they're not a new lesion, they're just a flare-up of old symptoms - in other words, it wouldn't stop me from getting pregnant, but I would definitely keep the PR thing in mind so that you're prepared if it does occur.

Also in my experience only, they may flare-up and bug the heck out of you, but they usually settle back down to where you're "improved" state was after a while.

Also, wow, you are one tough cookie to go through that while pregnant - that which doesn't kill ya, right?
Shannon (aka Shan)
The noob. ;) Dx'd with ideopathic TM with minor paresthesia/dysesthesia in 02/11 with a lesion at C-1
ramblings about my tm: http://spinaldiscord.blogspot.com
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Re: got TM while pregnant with first child

Postby brambles » Thu Jul 28, 2011 6:45 pm

Thanks for the reply! I read your blog link, and your TM sounds very similar to mine-- my lesion is lower, C-7 I think? Thoracic, so numbness is lower. I had the same experience of reading the literature on 1/3 fatal, 1/3 severe paralyzed, 1/3 "recovery." Pretty surreal. It was terrifying to realize what could have happened and didn't and to realize how nasty TM is. I haven't had any flare-ups myself; it always feels the same, like the sensation of your foot being asleep, just all over from the chest down. No tingling. I wonder if the stress of the pregnancy would cause a relapse. I don't know if I realized how terrified I was until my husband and I decided to try again for a child, and I kind of flipped out as soon as we made the decision.

The frustrating thing is that there don't seem to be any answers-- no one knows anything about it. My neurologist said no reason to expect a relapse, but my obgyn was more ambiguous and said could go either way. Since I thought I had MS for 9 months (and bladder problems, and trouble walking, etc.), the pregnancy was hell. :) But my daughter is so great....I keep thinking I can grit my teeth and just get through it again, but what if something really goes wrong? The stakes are even higher now that I have my daughter. I just feel totally stuck and desperate for information which doesn't seem to exist. Thanks again for the reply! It was nice (not the right word, of course) to hear from someone else who has this since it's so rare and bizarre.
brambles
 
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Re: got TM while pregnant with first child

Postby shorty313 » Wed Aug 24, 2011 6:07 pm

Hi!
I was 7 months pg when I got TM. Mine came on suddenly and I was put in the hospital fairly quickly with near paralysis from the waist down. I had the high dose prednisone and all that, but was terrified for my son. I was one of the 'lucky' third that recovered 'fully'. I still have some weaknesses but life is almost back to what is was pre-illness. Thankfully I have no pain. My son was born 3 weeks early but healthy. I do not plan to get pg again (fear of relapse is part of it) but I already have a daughter too.

It is rare to see a pg woman with TM - I was at U Penn ( a teaching hospital) and I felt like the freak show being paraded around to all the doctors/interns. ;) Just wanted to let you know you are not alone!
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Re: got TM while pregnant with first child

Postby Sew » Sun Aug 28, 2011 12:03 pm

There was a gal on here quite some time ago who got TM 6 months after her first daughter was born. In fact today is the 8th birthday for her daughter. Anyway, she and her husband could not decide whether to try for a second child or not. Before they could make a conscious decision they found out she was already pregnant. The worst part for her was going off her meds for pain etc. However, she had quite an uneventful pregnancy. She now has 2 daughters. Sometime after her second daughter was born her diagnosis changed from TM to MS. It turns out it was MS all along. Since I got TM back 8 yrs ago on Sept 6, 2003 I have heard of several people who initially were diagnosed with TM who later on were diagnosed with MS. This is not to scare you just giving you some info that I have learned along the way.

I guess there is really no answer about whether you could have another attack etc. Recurrent TM does happen but as far as I know it is not triggered by anything in particular. Just another of lifes mysteries with this TM condition. The reasoning of 1/3 rd's too. Myself, I'm going to be 66 in a few days. I am in the middle 1/3 of partial recovery or I say 'walking wounded'.

Getting pregnant again will be a decision that only you and your husband can make. Perhaps looking at some MS websites might help too. I call TM the 'poor cousin' to MS.

Heather
When given lemons, make lemonade!
Heather in Calgary
Keep smiling :)
TM since Sept. 06, 2003
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