Hi Cherie, I am new here & hope you won't mind my prayers added to the others. I know this is sooo hard for you to see your baby like that. I know she is 13 but still Your Baby.

Thanks for the update Cherie. :hug: Give her a big hug for me, the poor sweetie. I hope this clears up and never returns, and will soon be a dim memory.

Hey Cherie! Glad to hear your DD is starting to feel better. Will certainly keep her and you, too in my prayers. Keep us posted and take care of yourself, too.

Mama Cherie...Still thinking about you, DD and the stress and worry, you are going through.....saying a little prayer each day for you both..:hug:

i'm glad all the testing is behind both of you cherie.
please rest too.

take care.

Dear Cherie,

OH MY!!! What a horrible ordeal for both your daughter and you to go through. Sorry for coming in so late, my energy level isn't up to par yet. Like others have said, that's been my worst nightmare after being diagnosed with this monster. Keep asking my adult kids if they have any strange symptoms, etc. Wouldn't wish this disease on anybody. Of course at the time when they were born, I didn't know all this stuff was going on in my body.

Whatever it was that caused her horrible symptoms, I pray never comes back. I'll be praying for her and you too that all this stress doesn't cause an exacerbation for you!!! IMHO, all that stuff about too much stress for her sounds like a bunch of carp and a copout!! Strange it happened just after the MRI and LP!! All the best to your family and I hope your life gets back to "normal" soon. Isn't it a great thing to have all these supportive friends here that truly understand?!?!

Gentle hugs........:)

Cherie,
I just saw this thread so please forgive me for being so late. Sending good vibes to you both. Hugs, Jules

Cherie are you comfortable that her MRI, as it was, is a good representation of what is going on in her brain? Would you have to wait long if its deemed necessary to repeat it?

Hi Cherie,

I am SO sorry that you and your daughter are having to go through all of this right now, on top of everything else!!:hug:

I'm so glad that the test results came back OK and that they don't show any obvious problems at the moment - that must be a relief although I am sure you must be pretty confused. I remember when my test results first came back clear, we were sooo confused as we knew something was wrong with me, just not what. If I could say anything to you though, it would be to keep believing your daughter and listening to how she feels. Maybe keep a log of how she has been doing, if anything makes her symptoms worse/better etc? Just because the test results came back OK, doesn't mean that she has nothing wrong with her or that she needs to see a "Mental Health Worker"!!! You are her mother and I am sure you would know if she was "faking" the illness ... I know my mum said she knew straight away that something was wrong and that I wasn't just putting it on!

You are a great mum Cherie and I am sure your daughter really appreciates everything that you are doing for her, especially considering that you have MS also! :hug: I honestly don't know what I would do without my mum - she has been with me throughout all of the rough and good times and I could never thank her enough and i'm sure your daughter feels the same way about you, even if she may not show it in person!

Take care and know that I am thinking about you and your daughter. If you ever need to talk to anyone, please know that I am here for you and so is my mum because we DO understand some of what you are going through and how worrying and scary it is dealing with all of the tests etc.

Thinking about you and please keep us updated as and when you are able to!

How are things going this weekend, Cherie? I hope she's feeling better and you've been able to relax a little.

You're both still in my prayers. :hug:

I just read what all your daughter and you went through! You are both in my thoughts... Hugs.

I wanted to add I just received the National MS Society's quarterly magazine and the main article has to do with kids being diagnosed with MS now. I think you can go to the NMSS's main site and read their article.

Take care.

to the original poster, sorry if i dont have time to read through all of the postings.but i just read the title and it reminded me of my personal life.well my fiancee Jennifer was diagnosed with MS at the age of 13.the most difficult part if you ask me was the diagnosis because it is such a long and pain full process including spinal taps and many other horrible things.well as i said she was diagnosed at 13 she is now 19 about to turn twenty.although she has MS this does not stop her from enjoying her life.the only thing that really sets her back is heat,and the sun.in her words she describes it as being drained when she gets too much sunlight or she is exposed to heat.the other times she feels bad is the day following her Avonex injection.she takes this once a week and has been doing so since diagnosis.im sure she can asnswer more directly steered questions than i can so ask away and i will show her.

Hi all,

Thanks for all the messages, Leggz, Kelly, dlluvspigs, gardengrl, wiz, dm, maryann, sally, judy X 2, Jules, ali, 0357, Ojpinky.

I'm sorry I haven’t been back to say how much I sincerely appreciate everyone’s support, suggestions, thoughts and prayers. I guess I got kinda' over-loaded on the upset and stress of everything that I just couldn’t bear to talk about it any more for a while.

Today is the first day without drugs for her back and/or head!! I am happy about that. :)

She is still numb in the same places, and has the hyper-sensitive skin. The vertigo and nausea is gone, so she is back to eating, sleeping, and going to movies with her friends. She finally got out today to spend the money she got for her birthday, at the beginning of Feb, so we know she is truly on the mend. :D She has grown accustomed to many of the sensations (funny how people can do that, eh?), but they do get more noticeable in cold or hot.

I still haven’t decided what I am going to do about our hospital experience, but I will likely get around to writing a letter when I have more energy. My ON has let up, but my legs are still quite numb & heavy, and I am sleeping a lot.

Jules, as far as the MRI, it was done without contrast. I know that any enhancing lesions would not show, and I really can’t imagine she would show much more than that (i.e. T2 lesions) at this early age/stage anyway. The main reason I went along with it though was because I wanted to make sure it wasn’t anything else, like a tumor, which does not require contrast to see. But clearly they can’t rule out MS based on the results so far ...

I agree Ali, about supporting and believing my daughter. It’s kinda’ hard, because they are wanting me to make sure she isn’t stressing about the possibility of it being MS . . . which means I have to suggest it could be a “teenage coping mechanism”. I know that’s not the case, but I told her “no matter what it is, stressing isn’t a good idea”. She knows I believe her though.

Thanks for the info on the pediatric MS article, 0357. I'll look that up.

Sorry to hear about your fiancé’s experience, Ojpinky. It was grueling to see her go through that, and I know she would be strong and brave like your g/f if it turns out to be MS. My kids think I have a cake-walk life, so they are not too worried about the prospects of an existence of “sitting around the house on the computer all day”. All the best to the both of you!

Her next appointment to go over the results is mid-April, so I will be sure to get copies of all the results. I doubt I will seek a second opinion at this point, but I will if things escalate again.

Thanks again, Cherie

Hey Cherie,
Just wanted to check in with you and see how DD is doing. Hope all is well, Jules

:hug:I hope everything is okay..........:hug:

Things are just plodding along here, with some improvements, thanks. :)

She is numb in all of the same places, and still has the hyper-sensitive skin. The numbness is not quite as pronounced as it was, so that's good. :) The skin issue is still all on though. :(

Her fatigue has mostly let up, and her spirits are good. The vertigo is GONE, so I am very pleased about that. :D

Her back is still sore to touch from the LP, but she only gets a headache (and/or back ache) towards the end of some days. She is still on Spring Break, so she hasn't had to do gym or sit in her desk either though, so we'll see how she goes next week.

Her appointment to go over all the results is mid-April, but I am not expecting to get confirmation on anything, except that they don't know why it happened. :cool: It should be interesting when the neuro tries to tell me that she is confident that "it isn't MS", since they did not even use contrast with the MRI. Of course it is good that she obviously has no T2 lesions . . . but how many of us do when we first get MS anyway?

As I think I said earlier though, I only agreed to the MRI (and LP) to rule out tumors and alternate medical concerns . . . and we did that. We might still have to deal with organizing a blood patch during that meeting though.

Mental health has put her on the end of their 6 - 8 month waiting list for counseling, because they see no immediate disconcerting "issues". I could get counseling for her through my extended health if I thought it was necessary, but I don't think it is. I'll play 'the game' though, so I am seeming cooperative. :D

So, things are ok for the time being, thanks. :hug:

Cherie

Its a shame they didn't use contrast, sheesh they had her laying there anyway, but as you said its way more important to know you aren't dealing with a brain tumor etc. I don't think I'd have another spinal tap if I had the horrific reaction she is still suffering from. :(

Do keep us posted. I'm sending many good vibes your/her way.

Thanks for the update, Cheri. Glad to hear she's getting out and about and doing teenage activities. I'll keep her in my prayers and please keep us posted.

Thinking of you, too!

They were originally going to keep her in the hospital for a week, to do all the testing, and they probably would have done the contrast if they had. I procrastinated taking her in though, and they filled the bed in the meantime. :(

Since she ended up being an out-patient for the back-to-back MRI and LP, and she was SO sick already, I didn't want to put her through the MRI contrast too.

I really just wanted to know if it was something "else" ... and I am not ready to seriously consider MS. :( Yep, me an' denial go back a L-O-N-G ways . . .

Thanks ladies,

Cherie

hugss to you and your daughter, been trying to catch up and read at times, and wanted you to know you have always been in my prayers for daughter and for yourself. hugsssss

sarah

Here's hoping that the middle of April test findings are definative, but nothing that can't be fixed. I'm in denial for you too Cherie..:D:hug:

Thanks so much for the up-date, Cherie. I'm glad your daughter is doing so much better and will keep praying that it continues. Can't remember (MS brain you know) if I mentioned before that with my fibro, many times my skin hurts even if a breeze blows on me. It's especially bad during a flare-up, just like MS. There are so darn many of these auto-immune and other type diseases with the same symptoms.:(

Please try to take it easy yourself, although I know what it's like being a mom -- and grandma!! We can stand anything for ourselves, but don't mess with out "kids"!!

Love and prayers........:)

I am sorry she's been so sick and had to go through all this. I hope it all turns out to be nothing serious and she bounces back Teenagers tend to be so resilient.

I hope you get back on your feet again soon as well. Keep us posted on the progress of the test results and get well, both of you. :hug:

Thanks Sarah, Sally, Judy and Cheryl.

Judy, I was originally considering Fb actually, because she was also complaining about two spots that were close to her collar bones, on either side, as being painful to touch. I didn't really know how to test the right spots, but she did "seem" to be sore in the other "pressure point" places that I tried.

At that point I was thinking everything just seems to be hurting . . . but when I tested other places, she had no pain. She'd have had to literally read up on the pressure points to be as spot on as she was about the Fb symptoms.

So, Fb seemed to fit, I thought. :cool:

When I mentioned this to our GP, he was not impressed. :mad: He told me to stay off the internet, and said "You know these things take time ... hopefully a L-O-N-G time". My doctor is NEVER this abrasive with me (well, except when my MS denial went on for 14 yrs :D), so I was a bit taken aback by his response. :eek: He went on to say that Fb is a dx when EVERYTHING else is ruled out and they can't find a reason for the symptoms. He said that even that dx would take time ...

But I still have Fb on my radar screen, as my sister has that. She also has syringomyelia, which causes similar symptoms to our severe spinal cord ones, but the rest of whatever is happening to her could only be explained by Fb . . . at least so far. :cool:

Someone sent me some information (by PM) on a shingles-like ailment, that sounds interesting too. My daughter has actually had chicken pox twice (once minor, once major), so I'm not sure if she is a candidate for this condition . . . but the symptoms sure seem to fit.

You are right Cheryl, kids bounce back better than adults. This daughter has had severe second degree burns (from boiling water), and she coped very well when that happened. This has been a bit too long of a process for her liking, but she has learned to tune much of it out. :D

Cherie

Hi Cherie,

I have a big problem with doctors who get 'short' with patients. Through the years I had doctors who got short with me...which caused me to stop 'complaining'... therefore not being dx for over 15 years after my symptoms started. I decided maybe it was just all in my head. So you just keep asking as many questions as you want. I wish you and your daughter best wishes! :hug:

2 diverse suggestions, have they thought of Arnold-Chiari, espicially if there is a relative with syringomyelia....
and have you thought of having her seen by a chriopractor......perhaps she has issues in her neck.....i would want to rule out the first, before trying the second....