Trying to rule out MS in my 13 yr old daughter
 

My 13 yr daughter went numb in the lower face, neck, torso and underside of her arms about three weeks ago, and she hasn't gotten better.

She has also been having "pulsing" headaches, and EXTREME vertigo. She is hardly eating, and is exhausted but can't sleep for the vertigo. They have her on SERC now, and it is helping her somewhat.

The numbness spread to her underside of her legs, and both feet last weekend. She had a cold too, with a fever of 103 for most of 3 days, so I wasn't trying to assess anything new over that time.

She had been to the Children's Hospital, and the pediatrician neuro has kept in touch weekly. She phoned Monday and wanted her admitted, but I pushed it off till Tuesday. Unfortunately another emergency came up in the meantime, so they gave her bed away.

She is scheduled for a MRI tomorrow, and LP on Friday. I am Ssooooo not happy about the LP (I had a TERRIBLE time with mine), but they are insisting.

Please keep her in your thoughts.

Cherie

Oh I am so so sorry, Cherie..:( Only 13..:eek:.. I hope not..sheesh.. Your biggest fear..:mad:

All the Hugs and prayers heading to you right now.:hug::hug:

Ack Cherie. I really hope it's not MS :( You're both in my prayers.

Oh Cherie,

I so hope it is not MS or anything serious. Hope the LP goes ok. I did not have a problem with mine.

I don't know what to say, Cherie.

I really hope it's not MS, she is just so young. Give her a :hug:from me and I'm sending you one too :hug:

I will be :smileypray: she doesn't have MS.

I dont know what is a LP Cherie, but I will pray, first, for her not having trouble at her tests, and second, for her not having MS...

Third prayer will be, in case she has it, God please, make her strong as her mom :hug:

:smileypray::smileypray::smileypray::smileypray:

Keep us posted !!!

God Bless you and your daughter !!!! :hug:

Cherie, you'd be one of the first to tell us that many other conditions have symptoms that mimic MS, but I understand how you feel. I would be terrified if it was my own daughter who had symptoms like these.

It is however, good to know that she has a pediatric neurologist to oversee her care, and that appropriate investigations have been ordered.

Please know that I'm praying for you and your daughter; praying that there's a simple explanation; praying that she soon starts to feel better.

Sending hugs for your daughter Cherie, and loaning you my shoulder to lean on.

I'll be keeping you both in my prayers Cherie. I truly hope it isn't MS. :(

Thanks for your support.

You are right, Koala, and I have thought that way all the way through.

At first I thought a virus (like meningitis), and took her to a local Hospital. She had no fever or other signs of a virus, so they ruled that out right away and sent us home with the instructions that "if she didn't improve over the weekend, bring her back."

I happened to have a MS Specialist appt on Monday, and mentioned to her my daughter's symptoms. She jumped on it RIGHT away, and said "GET HER INTO CHILDREN'S HOSPITAL NOW!!". I took her the next day.

There was a team of specialists that assessed her all day; 4 doctors in all. The pediatrician neurologist gave me her business card at the end and said "I want to personally follow your daughter". Please call me next week to let me know if things are not better.

That's how it all started, and things have only gotten worse since then. I've been researching like mad to see if her symptoms fit anything else at all . . . and had come to the conclusion that fibromyalgia fit quite nicely. :D Her doctor actually got very annoyed at me last week, and told me to "stop looking on the internet", "you know these things take time, hopefully a LONG time". That was the first time I seriously considered MS. :(

She hasn't been at school for more than a few hours over the past three weeks. The pediatrician neuro said it has to be dealt with now. :(

I'm taking her for the MRI tomorrow, and her dad is taking her for the Spinal Tap. I can't handle that part. :eek:

Thanks again,
Cherie

OH Cherie!! Nightmare doesn't even seem like a big enough word for this, is it? I'm SOOO Sorry. When I read the subject line, I found tears in my eyes and a lump in my throat.

I don't have words for you....I can't even begin to imagine everything that must be going on inside of you...

Please keep us posted and know that we are all wishing and praying for you and your daughter...

much love,

keri

Cherie,
 

I am so sorry about this. You and your daughter are in my prayers. Let us know as soon as you find out anything.
:hug:

Cherie I am praying for your daughter. Did she fall, or be in a car or bike accident? Maybe Migraines? I am so very sorry she is feeling so sick and dizzy. She must be just as frightened as you are. It really stinks!

Children should just have normal kid illnesses, not ones that are so terrifying to a new teenager. I pray her tests go well and they find a virus or bacteria bug or some minor cause for all her symptoms. I guess b12 was tested, Lyme disease, Meniere's?

Is she handling it all right or is she thinking MS too? I don't know how much is being shielded from her. Since she is your daughter, she probably is one very smart person, just like her Mom.
{{{{Cherie and Daughter}}}} :grouphug:

Your daughter and you are in my prayers,Cherie. :hug:

You all are in my prayers, I know what you are going through.

My son is 20 and is going to be going to the neurologist on the 11th to have consult and tests to rule out MS. Seems like since we made the appointment, which seems like ages ago his symptoms are getting worse.

Oh Cherie, I'm so sorry about your daughter :(. I know what it's like to have a chronically ill child. I really, really hope it isn't MS. I'm sure she is really scared right now. I didn't have any problems with my lp's. Hopefully, she won't either. I'll be thinking about your family :hug:.

shes in my my prayers Cherie.:hug:

Cherie,

My thoughts and prayers are with you and your family! I have a 15 yr old daughter and I can imagine how difficult this must be for you. I will be praying this is a "false alarm" and that the MS monster is not the culprit. Your daughter is lucky to have a Mom like you!

Amy :grouphug:

:hug: Cherie :hug: I'm praying that it isn't MS. Please let us know how things go and if you get any answers. You're both in my thoughts and prayers. Hang in there.

Oh Cherie ! All the best for you 2 !!! I forgot to mention, Im sending you prayers, thoughts, good vibres and.... MARGARITAS too !!!! :) Just to cheer you up :o

Let us know what they found. Hopefully nothing too serious.

Let's keep positive !

Oh, no, no, no, no, no, no, no!!!!!

I'm not even a parent and it totally wrecks me just to think it. Count me in on the prayers that it's something fixable and not this.:(

sorry Cherie - no parent wants to go through that - you are all in my prayers.

Sorry to hear that you are going through this, Cherie.
Praying for good results. Let us know how you are doing and what the outcome is!

Cherie don't know what to say except that your DD and your
family will be in my prayers.

Be strong

Jappy :hug::hug:

Cherie, I hope that everything went okay today. I've been thinking about you and your daughter and will continue to do so and look for your updates. :hug:

Hi all, and thanks again.

I'm tired. :(

Well, the MRI went ok, I guess. Not quite as uneventful as I thought it would be.

They planned to do her brain first, then give her a little break while they did a little baby, then bring her back for her spine. The brain was meant to be 10 min, and the spine 25 min. They had this great MRI machine though, that wasn't even a tube/enclosure; it looked more like a CT scan, so that made it much less intimidating. They said it was the newest technology and made me wish I was a kid who got that kind ... or maybe the technology has changed everywhere since my last MRI in 2003.

They couldn't get proper pictures of her brain because of her braces. We thought that wouldn't be a problem because she has the newest type of braces on the market . . . but I guess they didn't think of MRI machines when they invented them. :rolleyes: We ended up waiting 45 min to see what the neuro said about trying the spine, and in the end they decided to go ahead with it.

They locked her in the face cage, wedged her head in, and started the "25 min" procedure that ended up taking over an hour. I was in the room, but the noise and time of day were lulling me into a little nap. When I woke up, I saw her legs were twitching like crazy. I waited till the noise stopped and went to her to see if she was ok. Her head was locked in that clamp and she was crying her eyes out. Her leg were completely numb and her neck was "so sore!". She said she couldn't take any more.

The radiologist saw me talking to her and asked if she was ok. I told her she wasn't, and he said "I guess we have enough then".

When we left he said "You're waiting to hear the results from her doctor?", and I said "well I was kinda hoping you might get a message through to her doc before the morning, in case we can avoid the LP that is scheduled". He said "I don't think she's going to be able to do that" . . . so either he didn't think he could get to the doctor (in that hospital) quick enough, or he didn't think a LP could be avoided. :cool:

So, I am none the wiser at the moment, but the MRI was more traumatic than I hoped it would be. That was supposed to be the easy part. :(

Tomorrow at 8:00 am is the LP. Will keep you posted.

One bit of good news is that she went to sleep without vertigo meds for the first time in 3 weeks last night. :)

<big sigh> Cherie

Thanks for the update Cherie, but I'm so sorry that it was traumatic for your daughter.

Let her know that your friends are praying or her. :hug:

Awwwww the sweet little thing....my heart goes out to her and to you Cherie, for having to stand by and take it..:( How awful for both of you.:hug:

I hope the LP goes smoothly..:hug:

Thanks for keeping us updated.

Loving prayers for you both.

:hug:(((((Cherie & Sweet Baby Girl))))) :hug:
More :smileypray:

Was it this type of MRI machine that they put your daughter in?

link to news story

The link takes you to a news video from a local tv station about a brand new MRI machine. It's supposed to be great for claustrophobic people like me.

I'm not sure if they said what Tesla this machine is. I got the feeling that it's probably a Tesla 3 because they mentioned that it's stronger than the traditional Tesla 1.5's. (think it was this news story that said that. I've seen two stories about it so far.)

This is what I'm hoping to be able to have my next MRI in. (I go to the MS Clinic in April...they like new pictures apparently. I'm hoping to avoid the MRI for financial reasons)

It doesnt look as scary as the others that I've been in.

I'm sorry she didnt have a good experience in the machine. (I didnt either for my brain MRI...it triggered my claustrophobia. Hate MRI's!)

Hopefully they'll figure out what's going on soon and that it's something fixable and will go away.

Holy moly, Cherie! What a day!! I really hope that the LP goes more smoothly than expected. You BOTH must be exhausted, physically and emotionally!

:hug:Cherie, I'm just seeing this now. My heart goes out to you and your daughter. I hope the LP goes quickly, and much better than the MRI...AND I hope it's something that can be fixed ~ not MS..I'll be thinking of you and your daughter and praying for you both today. Hang in there kiddo!

Just wanted to let you know that I'm thinking about you and your daughter. I hope that they are able to find out what's causing her problems. I'm so sorry that you both are going through this.

Cherie, I am so sorry your DD is going thru all of this. I cannot imagine how difficult this is for you and her. My heart (as a mother and grandmother) goes out to you.
I am hoping/praying for wellness for your DD and strength for you :hug:
Linda

So she made it home, safe and sound. The LP wasn't so bad (they had her pretty drugged up), and everything went precisely as planned.

The initial testing and review of her results came back clean; no tumors, no obvious infection, no lesions. The testing for O-bands will take time (a few weeks) . . . but everything "looks" good at this point.

So the pediatrician neuro says "maybe it's just teenage stresses", which I expected to hear if nothing bad showed up right away. :rolleyes: She is one of the happiest, least stressed out kids there are . . . almost TOO laid back actually. :cool: I might have gone along with the "emotional coping mechanism" if it was my eldest daughter (she pushes herself very hard), but this daughter doesn't process deadlines, and doesn't really care about anything . . . she's kinda' blonde that way, actually. :eek: :rolleyes:

The good news is that it is not a tumor or anything critical to worry about at this point, and once she heals from this ordeal, we can move on with life for now.

The LP didn't hurt that much at all, and so far just a minor headache and a "bit" of a sore back. :)

Thanks for holding my hand through the worst of this. :grouphug:

Cherie

Well, I am so glad the LP went OK. I know how worried you were about that part. Hang in there, mom.

Cherie, I am just seeing this. I am glad to hear the testing came out OK. I'll pray for the lp results to come out clean as well. Even though we all know coming out clean doesn't mean much, it's a start to finding the problem. Give your daughter a hug from me and Jim. :hug:

Cherie, I'm glad the LP wasn't a bad experience for her. After the MRI she was probably apprehensive about it.

I hope things continue to go smoothly for you and her. You're both in my prayers. :hug:

Thanks for the update and the good news so far! I hope the LP is negative as well but also hope that other answers will be forthcoming. Did you get all blood work results back yet?

cherie,

i hope your daughter gets better and they find out what's wrong, or what was wrong.

saying prayers for you all.