Hello, Our 16 year old daughter has just been diagnosed with MS after two bouts with optic neuritis. Her initial MRI revealed 13 lesions throughout her brain with some evidence of growth and new lesions after a second MRI with dye-no bright spots however. She also suffers from mild to moderate OCD and I understand there is some connection between iron build up in the brain and both conditions (MS/ODC). I am looking for any information regarding the link between the two diseases and any information regarding the success of the imodifying drugs (CRABs). There seems to be lots of info re adults but scant for teens. Thank you for you time on this.
I'm pretty new around here so my response will be limited to welcoming you to the forum. I'll also add to that my best thoughts for you and your daughter as you tackle dual diagnoses. She's fortunate to have you as her Mom/advocate.
Despite this being a busy multi-holiday season, I'm sure others will be along soon.
We do have the perfect person here to address your concern. She's a pediatrician who has a heart for kids of all ages as well as a mind for health and dis-ease and the kindness to teach us with words we understand. Oh yeah, she also has a personal diagnosis of MS.
I'm sure Quix will see your questions soon. The sun is probably just getting around to starting the day in her west coast state. Start thinking of more questions while you wait. All are welcome here.
I want to also welcome you to the forum. You found a wonderful place for support here on this forum. There's many people here that have experience with the DMDs and can share their experiences. Plus, there's lots of information as well. If you haven't visited the health pages (see top right corner of this page), it's worth the time. It was filled with lots of information of DMDs, tests, and problems related to MS.
There are also members on the forum that are quite young (although not as young as your daughter) that can offer their experience and insight as well as to how they live with the disease. And there are at least two people that are living with MS that have daughters with the diagnosis themselves. Plus, as mentioned, Quix is a huge support for us on the forum and was a pediatrician prior to her diagnosis with MS.
Did your daughter's neurologist give you information on the CRABs? I received lots of literature and DVDs when I got my diagnosis. I read everything about them, talked with others with MS, talked with neurologist of course, and did research on the Internet. Some of the CRABs may cause an increase in depression. I am not familiar with OCD and the risks of depression with this, but if she's prone to depression, this should be considered before choosing a medication.
It must be hectic around your house right now with the holidays and your daughter's recent diagnosis! I can just imagine how you must be feeling right now. I have two daughters of my own--one just a couple of years older than your daughter. Use us for any question that you may have, support, or for whatever.
Another welcome here. You'll find lots of info and support, and we'll do our best to answer your questions.
I don't know much about OCD or about any connection between that and iron build-up, so can't comment on that. As to MS and iron in the brain, this is quite a new theory that is generating lots of interest, but at this point it's only a theory. There are things that make sense about it and things that don't. Lots more research is needed.
Welcome!!! Hope everything works out and you get all the answers to your questions. There are many very knowledgable people on this forum, please keep posting your questions and updates as you have them.
Sorry to hear of your daughter's diagnosis. I can personally attest the the gut-wrenching emotions one goes through with this dx. I just went through this with may daughter. They have settled on a thyroid condition as a mimic for the her MS symptoms at this pint in time.
Do you , yourself have a MS dx? I do and was so afraid I had passed the gene onto my daughter.
Please get comfortable here and ask any questions you'd like answers to and we'll do our best to lead you in the right directions. We aren't doctors and cannot diagnose but we can share out thoughts and experiences, good and bad , with you and hopefully help you find the right treatment for you daughter. I am so sorry to hear of the dx but it is NOT a death sentence. Come here anytime you strength or support.
Hi AMC, MS is not inherited - but we do know there seems to be a genetic predisposition toward MS but not always. There are many who have no familial link at all to MS, and that may well be the case for your daughter.
I sent you a private message - if you have trouble finding your inbox for that message, let me know.
Hello, I am sorry to hear about what your daughter is going through. You may already be aware, but there is a very active Halifax, Nova Scotia chapter of the MS Society --- it's located in Dartmouth actually. Some chapters have support groups specifically for kids/teens with MS; and also for caregivers of MS patients. I'd encourage you to give them a call and see what they might be able to offer you in terms of support, and the kind of information you are seeking.
A belated welcome to the forum. I'm sorry I missed your post.
What an awful thing to be facing as a parent at any time of the year.
In general, most of the things that apply to adults also apply to teens with this disease. There are a few differences, but nothing major.
I will look to point you toward some teen info if I can.
Your daughter has some features that point to a more benign course for her MS - statistically. The strongest ones are 1) female, 2) young age at onset, and 3) Optic Neuritis as her presenting symptom.
I believe the DMDs (MS meds) act about the same in the teen group.
Like the others, I really hope she can hook in with other groups of teens. This kind of disease truly affects them differently.
One of the things she might be worried about is her ability to have and raise a family. Current research is indicating that childbirth may favorably affect the course of a woman's MS. Years ago, women with MS were discouraged from having children and this is no longer the case. Also breastfeeding delays the after-delivery relapses that are so common. Now, lol, I am not suggesting that she march out and get pregnant, but the worry about how much of a normal life she can have may be there - and that we know something about.
Also, it is expected that young people today will have very close to a normal life span on average. We just have to expect some bumps in the road. And a goodly number, never end up very disabled by their disease at all - about 1 in 7. So, this is not a death knell for her or for the life she has envisioned. It will likely require some flexibility and occasional work-arounds, but MS is not like some many people believe - that it is a steady progression into a wheelchair.
The US has several Centers of Excellence in Pediatric MS. Two of these are in New York. I can get you the info for them if you are interested.
I'll check out any OCD/MS link. Was the appearance of OCD recent? It can be one of the ways MS presents. There are many affects that MS has on people's neuropsychiatric behavior.
Thanks for the words of encouragement. We are in touch with the Buffalo clinic (BNAC) but would welcome any other info. The OCD appeared early around age 6, as far as we can tie togethre. Perhaps a link wuith pediatric strep. You are right about these diseases all being meshed together. Makes it difficult to locate MDs who are versed in all. Where did you hear about the link between MS and OVD?
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