I have all along thought these symptoms are more consistent with MS. My pediatrician says it's unlikely that this is what it is. I know it's very rare in children, but she already has 2 autoimmune diseases. I know her MRI was clear in November, but can't you have a clear MRI and still have MS?
Last year was horrible for us and she felt like no one believed her because sometimes she felt bad, and sometimes she didn't. I have also been told that the symptoms (pain, numbness, tingling, fatigue) can all be due to her thyroid problems, however since she has been on meds for that her levels have been normal. So I'm here to ask you all for help. What should I do next? She is only 10 years old, and I feel like I'm having to all the research and be her only advocate.
My oldest son has RSD (reflex sympathetic dystrophy) which is the same as CRPS. It is very real and it is very painful. The treatment for it is anti-seizure meds that help the nerve pain.
I hope you find some answers soon.
9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
the answer is, "Yes."can't you have a clear MRI and still have MS?
Historically, there have been very few cases of MS in children. But in recent years more and more young children have been found to have the disease -- there have even been a couple cases in children as young as two years old.
In fact, six pediatric MS clinics have been established across the US in the last few years.
You seem to be aware of the fact that people with one autoimmune disease are likely to develop a second or even third autoimmune disease.
My recommendation to people with a recent connection to MS is to educate yourself and read as much as possible on the disease. For starters, the Reading Nook forum here have some suggestions.
Personally, I think the best treatment at present is in diet and exercise. I am not a physician, but I urge you to prepare a low-carb diet (no sugar, no artificial sweeteners, etc.) for your daughter. It is healthy and will not hurt her.
I have long thought her to be clumsey and uncoordinated, well before my dx. Does anyone see something familiar here? Anyway, since she got mono a year ago, she has not seemed weel, and really messed up her junior year in college (having been an 'A' student prior".
Well, this summer she announced to me that she had migraines (that was me when she was 2 yrs old). I finally took her to my neurologist. He ordered a bunch of tests, including brain mri, which was normal. I know that yes, it can be normal, and still have ms lurking there. However, i decided that I had done all the prudent things. She has a 'script for migraines. Now I will just believe in the best and most obvious, and follow up, if need be. People get things. She could have ms, but just because I have it doesn't mean she does. also, there is a certain amount of "copy cat" behavior. That is not to say that she is faking it, but let's face it: Kids are somatic. They feel things. Then they may copy behaviors they have witnessed. it is still real.
If, in the future, she was dx with ms, or likely ms, I would get her on something like tysabri or campath ASAP. But in the mean time, if I have her f/u prudently, and nothing is dx, then I can't make my trip hers, know what I mean? Just go along and enjoy the ride!
There was a woman who just published a book on the thyroid, and she had been diagnosed as having MS. I googled thyroid and MS and found this study on Pubmed:
I agree with Jimmylegs that diet and nutrition can really help. I also agree with the antibiotic protocols, annd lastly I am a big believer in the CCSVI theory. What doesn't hurt, but helps, is my motto....Karni A, Abramsky O.
Department of Neurology, Hadassah University Hospital, Hebrew University Hadassah Medical School, Jerusalem, Israel.
A controlled prospective study was conducted to determine whether thyroid disorders are present with increased frequency in patients with MS. We found that thyroid disorders were at least three times more common in women with MS than in female controls. This was accounted for mainly by the prevalence of hypothyroidism among the female MS patients. Because hypothyroidism is usually due to Hashimoto's thyroiditis, its association with MS may support the hypothesis of autoimmune pathogenesis for MS. Our findings might have therapeutic implications because interferon treatment can induce antithyroid antibodies and thyroiditis.
I hope you find your own solution.
So my question to anyone who can help is "What do I DO!!!!!!" She is miserable, but because she has no diagnosis, she has no treatment. I don't know what to give her for pain. I don't know whether to make her move, let her rest....no one will help me. We don't go to Birmingham until Feb . 10. I have searched the web for HOURS and cannot find a forum that deal with children. I have one for children with diabetes, and post there often and there is always someone there to help. I think I just need to know I'm not crazy, and need some ways to help her until we have our appointment. Thanks!
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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