I am a mom with two daughters, and I have been dx with Multiple Sclerosis for many yrs now. The reason I am on this forum today though is because of my 13 yr old daughter.
I'm wondering if anyone has any experience with fb and children, and/or even to get some experience/advice on fb symptoms. I'm sorry, but this is going to be a bit of a long story ...
My daughter started to get numbness in her jaw area about 5 or 6 weeks ago. I "assumed" it was just a passing phase, and maybe related to hormones or a "painless" hormonal headache . . . something along that line. It went away after a few days.
Two weeks later, the numbness started up again, and it spread. She had it in her jaw area again, her chest, the under side of her upper arms, and on one hand. At the time she felt very nauseous, and was sore (mentioned her neck), so I took her into the ER to make sure it wasn't mennigitis or something. They checked her over, and she had no fever or signs of a virus, so they sent us home. They said if it gets worse, to come back.
As the weekend went on, her skin became hyper-sensitive to touch, she got vertigo really bad when she laid down, and she really felt awful. I happened to have a neurologist appointment myself on Monday, so I talked to her about it. She told me to get her in to the Children's Hospital in the city right away, to be seen by a pediatrian neurologist.
We spent most of the day in the hospital, with every doctor imaginable poking and prodding. In the end, the pediatrician neurologist said, “well, it would be unusual for a child of this age to have MS, but I don’t really have an answer for you”. Because most of her symptoms were “sensory”, there were no objective neurological findings, but the doctor said she believed my daughter was experiencing what she said she was. Basically that is what happened to me in the beginning too ... even though I was paralyzed when they tested me.
The neurologist said “is she under any stress?”, to which I responded “what 13 yr old girl isn’t?”. She is just a really happy kid though, with no big changes going on in her life (she went through puberty at 11 yrs, so that’s not an issue), so I didn’t think it was a psychological coping mechanism. On the other hand, I am someone who believes in having a “safe place to vent”, so I have arranged counseling for her anyway ...
To shorten the story a little . . . it’s been three weeks now, and she is not getting better. There has been increased numbness, vertigo, nausea, etc. to the point where she can hardly function any more. They are going to do a MRI, and her GP and neurologist are doing everything to figure this out . . . but even if it is MS, that just takes TIME to show up.
So, last night my daughter said “mom, it hurts here”, as she pressed on either side of her collar bone. That made me think of fb pressure points right away, and I kinda’ tried to check the other one’s (many people with fb are on the MS forums, so I was aware of this symptom for fb). It seems maybe she has other pressure points too, but I don’t really know what I am looking for.
When I looked up the fb symptoms, I see nausea, dizziness, numbness (especially in the face, arms and hands), pain, skin sensitivity, etc. are ALL quite common symptoms for juvenile fb . . . so this got me wondering if maybe this is the cause, not MS.
Can anyone give me any advice on what to look for, your experience with this disease, whether you’ve experienced the same symptoms as her, etc.?
Thank you very much,
Scared mama, Cherie
I have: Fibromyalgia, ME/CFS, Holt-Oram Syndrome, nasal allergies, food allergies, depression, TMJ, anxiety
Married to a wonderful supportive husband & between us we have 4 children & 7 grandchildren
As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11
Hi Cherie - Welcome to the Forum. I hope we can help you find some answers.
I've heard that Fibro can kick in "during your childbaring years" so that would mean just about anytime after puberty. So, perhaps 13 isn't as uncommon as one might think. We have several members on the Forum that are quite young (High School Age). If you have a rheumetologist, why don't you could bring her there for a diagnosis, Rheumys are pretty up to speed on Fibro. I would also recommend that you get her tested more than once for Lyme Disease. I've had it 4 times and the symptoms are much like FMS. I had a lot of her symptoms when I was sick w/ Lyme. Lyme has a nasty habit of showing false negs. so sometimes it take more than one blood test.
Please check out the second thread on the Forum called Fibo 101. There's tons of information that's really helpful on there and maybe you'll find some answers.
You've really got your plate full, between MS and the possibility of FMS for your daughter. Please take care of yourself during all of this. It sounds like you're an awesome mom and you listen well to your daughter. I'm glad your doing all the things your doing for her and you have a good handle on the situation.
I hope for only the best results for you and your daughter. Please keep posting and let us know how both of you are doing.
You're in my most positive thoughts,
Hi Cherie and Welcome-
Lots of good advice given and it sounds like you are taking all the steps to get this figured out-
That waiting period until they can get to the bottom of things is scary and feels like time is moving as slow as it possibly can. The group will be here for you in the meantime!
Hi colabear/Aliza, and thank your for your response.
My daughter hasn’t really had any viruses, but she did have her Hep B series of shots that ended Mar/08. She is actually a very healthy kid, as a rule. This came out of no where, literally.
The numbness is what scared me about it potentially being MS, and of course it may be. The numbness (and sensitive skin) is still spreading, a little more each week it seems.
I took her to the doc yesterday cause I couldn’t get her out of bed, and she had really bad vertigo all day. He put her on a med, but I am going to try a naturopathic method first, as I'm really not too keen on using drugs much. She used it last night, and it let her sleep, but she still had vertigo. At least she wasn’t feeling so sick, but the burning was worse last night.
Her doc did not test her pressure points, and he was actually kinda’ cross with me for mentioning it. He said “you know these things take time, Cherie, and let’s hope it is a LONG time”. He said we basically just have to wait for the MRI, but of course that isn’t likely to show anything at this point anyway. Even if it does, it is highly unlikely they will be able to dx her, especially if it is MS.
Thanks again, Cherie
Post Edited (lady_express_44) : 2/25/2009 8:45:30 PM (GMT-7)
My MS is doing ok, thanks. I've had it a long time, and have learned to pace myself . . . but that is kinda’ hard to do at the moment. Fortunately I don’t work any more, so I can sneak in as much sleep as much as I need, as a rule. Thanks for asking.
I'm sorry to hear of all your daughter has been through, and for so many years. It sounds like you were very supportive though, and you are right that that kind of support makes a big difference in their lives.
Even her doctors are “believing” her at this point in time, but even if it does pan out to be MS, stress is one of the worse triggers for flares of the disease. It just seems to make sense to find ways for her to get the best coping mechanisms, whatever the future holds.
No, we haven’t tested for Lyme. I don’t think most of the Lyme tests are particularly accurate, and the only one I know of that is, is in California. I do have a call into a friend who was originally dx with MS, then changed to Lyme, to find out the doctor he dealt with to get the referral. Lyme is fairly uncommon, or at least unrecognized here.
Thank you for your support and good wishes.
Hi Sherrine, and thank you for pointing me to the link.
I think you are right about fb being a dx of exclusion. That is what our doctor basically said . . . we’ll do the most obvious testing FIRST, then we will move on to the less likely causes (like fb, in this case, apparently). I guess the first step is the drug/sexual activity/blood testing, then the MRI, and we’ll go from there. Two down, one to go ...
They are confident is not any kind of virus at this point (so a lumbar puncture is not recommended), and her symptoms are apparently not fitting for a tumor either. Those are really the only two things that would be “deadly” at this point ...
It can take several weeks to get a “non-emergency” MRI for free, here in Canada. I could pay $500 to get one tomorrow, but unless things change for the worse, I think I will wait. Most of the likely conditions/diseases aren’t going critical to get a dx for, at least not within a month or so. Even if we found out what it was, I'm pretty sure I’d let this “flare” run its course before treating it with anything more than symptom mgmt meds.
Thank you for the warm welcome to your membership.
Hi Patti, and thank you for your ideas.
I've heard there is a reliable Lyme test at a company in California, called Igenex. Have you heard of them?
My MS has been very, VERY bad on occasion, but mostly I am ok. Fortunately I have healed relatively well, between some spaced apart severe attacks. I've had it for at least 18 yrs now, but 18 + 13 = 31 . . . and that would be WAY too young for my daughter to be as disabled as I am. I hope that is not what happens.
I have never been to a rheumatologist, but I guess that step might come once we rule out everything else.
Thanks for taking the time to respond.