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



Keep us posted !!!

God Bless you and your daughter !!!!

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. 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.

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

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

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}}}}

Your daughter and you are in my prayers,Cherie.

Thank you for your support, everyone.

I ended up taking a bit of a break about stressing on all of this. It has really been a bad month trying to keep up with everything that was happening with her, and it has caused me some numbness and eye problems to contend with too.

I can't remember my last update, and am still too tired to look . . . so I apologize if I repeat myself.

I called Children’s on Monday, and they didn’t know what to make of it. Apparently they NEVER run into problems like this, so the nurse didn’t know what the next course of action would be. She was tracking down the neurologist on call, because the pediatrician neurologist who’s been dealing with my daughter had left on vacation. By Monday afternoon though, she sat up for the first time. She was still on heavy-duty meds every 3 hrs, but she was making steps in the right direction. We decided to see how she would do on Tuesday ...

Tuesday was slightly better than Monday, and by Tuesday night, she was able to eat dinner with us, etc. She was still on meds, but we managed to reduce them to every 4 or 5 hrs. She had gotten cabin fever quite bad by that point, and wanted to try to go to school the next day. I agreed to at least let her give it a try .... IF she could get out of bed in the morning.

She went to school on Wed, and made it through the day. She still needed Tylenol 3 alternated with Advil (back to every 4 hours again) , and she was exhausted when she got home, but she made it.

She went to school again today, and it was the first time she has woken up since last Friday without crying out for meds before saying “good morning”. She lasted 40 min before she asked, had some pain relief @ 8:30, again @ 1:30, and it’s about 7:30 now and she hasn’t asked for more. That’s after spending the whole day sitting/standing, so that’s HUGE progress.

They are on Spring break starting Friday, for two weeks, so she will have lots of catch-up on homework, etc. Thankfully she gets this break though . . .

So, the end result of the testing, at least thus far, is that she has nothing wrong with her. She is still numb, with hyper-sensitive skin, but the vertigo let up mid-last week (just prior to the LP). There are still some LP results that are outstanding, but the initial feedback is she doesn’t have any inflammatory process going on.

The pediatrician neuro was really excited to tell me that she “doesn’t have MS”, but in all honesty, I didn’t expect to hear otherwise and I told the neuro that. She was a bit surprised by my response, but I explained that I am aware that a MS dx often takes time (dissemination in time and space, etc.). She said, “Well the only objective finding was nystgamus”, and I said “that’s more objective finding than they had for me when I was paralyzed from the chest down in 1991”.

For now, I guess we are to approach this as my daughter has some psychological issues to work through ... so I tried to queue up some counseling with “mental health” to make sure she gets all the support we might be able to offer her. After a 4 page questionnaire, they determined that she will go on a 6 – 8 month waiting list as she doesn’t seem to have any “issues” that require immediate resolution.

We have an appointment to go over all the results in mid-April, and in the meantime hopefully the rest of the back pain, numbness, etc. will let up. The improvements are slow, but they are still heading in the right direction . . . so unless things stall or change, we’ll keep going along this track.

Thanks again for your input and kind thoughts.

Cherie

13 years old and already slaying dragons and baffling doctors. I am so sorry your family is going through this. You have faced my biggest fear. That is the one thing that I am absolutely terrified of, that my daughter might inherit this from me. I cannot even begin to imagine what you are going through, but I am glad her test have come back negative. And I am so glad to hear she is up and moving again. that had to be a horrible and petrifying experience. Mine was and I was almost 30. She is a trooper like her mom.