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Old 08-25-2011, 06:58 AM
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Dejibo Dejibo is offline
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Join Date: Jan 2008
Location: New Hampshire
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15 yr Member
Dejibo Dejibo is offline
Elder
Dejibo's Avatar
 
Join Date: Jan 2008
Location: New Hampshire
Posts: 7,332
15 yr Member
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First, Breathe. Just breathe. its stressful, its hard to swallow all of it at once, and you ARE going to find a truck load of dismissive or rude MDs who want no more than to push you out of their office, or have you believe that you or your child are being over reactive about this. Now, if it was THEIR child...

#1 there are more than 100 diseases that can mimic MS, including the lesions in the brain. The MDs normally start out on a hunt and start ruling out the most commonly proven things. Vitamin D def. B12 def, iron, zinc over load and the like. If none of that is out of line, they think Lyme, lupus, sjoghrens and so on. All of those can be proven or disproven by blood or other tests. Once they run out of things they can test for they land with a list of about 10 or so. Devics, MS...Alot of times if a patient has very few symptoms they will dismiss you and try to allow time to unfold so they can see if this will go away on its own, or bloom into something else.

Best advice. Get to an MS center. You may have to travel to one, and even if you only use them for a diagnosis and then use a local neurologist for care, its WORTH IT! Most every state has one, and if you cannot find one, tell us, and we will find one for you. They are the pros! they do this stuff, day and night. They know one lesions from another. They know exactly what this lesion is doing on that part of the brain, and what affect it will have on her course.

NEVER let an MD be dismissive of that little voice in side you. Sit them down and say "ya know, this is scary! its bugging me, and we want to know what is wrong with our child! Its our hope that you will slow down, speak english, and be helpful. If you feel you dont have answers or this is above you, tell me! refer me! dismiss my case to a new MD, but dont brush us off."

Keep a journal or a diary of her symptoms. You can use a wall calendar and write something each day in the box. "good day!" or "tingle toes x 2 hours left side only" but write something! Keep copies of ALL of her medical records. Trust me, they dont always transfer all of them when you are ready to move on. Its your job to make sure that your papers are correct and complete. If you find errors speak to the hospital to have stuff either removed or added to your file.

Eat better! Many folks find going gluten free provides dramatic relief, and others find it does nothing for them. At the very least, you should be cutting out artificial sugars, preservative, high fructose corn syrup and MSG. Many folks find they react badly to such things. Other folks would fight to the death about diet soda, but even a trial off of it to see if it changes her symptoms is worth it.

Then come back here, and talk to us. We are the folks that have done this, lived this, suffered thru this. NONE of us wants your daughter to have MS, but we also dont want her to be dismissed while they figure this out.

Place your child on Vitamin D. My MD reccomends at least 2000 IU per day. D3 is what you are looking for. With all of the sunscreens and genetically modified foods we are really lacking in vit D and we find those that live further away from the equator trigger MS faster than those that dont. With a multi vitamin and Vit D3 with a fish oil tab to help calm inflammation you give yourself and your child a fighting chance.

Hang in there!
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Betaseron 5/18/07
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Elevated LFTs Beta DC 7/07
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dmplaura (08-25-2011), Lady (08-25-2011), Lynn (08-25-2011), SallyC (08-25-2011)