Netherlands Daughter-update

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Netherlands Daughter-update

Postby Chris55 » Mon Aug 28, 2006 9:48 am

My daughter continues to improve. She is now on the "antibiotic" part of her supplement treatment. Seems to be having the Herx reaction on a pretty regular basis; however the severity has lessoned. She is back to teaching all of her dance classes (owns a dance school--has not been able to do much of anything in the past 2 years). She changed a tire on her sister's car the other night. Remarked a few months ago, she couldn't have done it!

One interesting story: On Friday, she went to her MS specialist in Atlanta (6 month visit. Question: If they are supposed to check the liver every 3 mos. for those on Avonex, why is hers only checked every 6 months?) Anyway, the "nurse" came in--no doctor--stood in front of a computer with a mirror above so that she could see my daughter with her back to her and asked for any new symptoms. When she asked if my daughter was on her Avonex and my daughter said no, I thought the nurse was going to have a stroke! "What! Why?" Daughter explained that she wanted to have a child and that Avonex recommended stopping 6 months before. The nurse responded: "Damn them! They have no business telling you what to do--they aren't your doctor. I will call them now and have a word with them. In the 15 years this drug has been on the market, we have NEVER had a problem!" Now--ask me how impressed I was with this exchange???

Anyway, that is all I have for now. God bless all!
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woo hoo!

Postby jimmylegs » Wed Aug 30, 2006 5:39 am

that is G.R.E.A.T. TO HEAR! and ya doctors/nurses kinda blow sometimes, dont they.
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Duaghter's response

Postby Chris55 » Wed Aug 30, 2006 11:07 am

Her doctor's office called yesterday to schedule an appointment with the doctor to get her back on her Avoje. Uhhhh--she told the lady that she had just been there last Friday! Then--she let her hold it!! Ended with if she was not going to be treated as an intelligent adult and her doctor could not even bother to see her once every 6 months, to give her a referral. The lady lowered her voice and said: "You have to do what is best for you!"

There were some problems with her last blood test. She insisted on a copy when she went last Friday. Two tests garnered no results because of a "forgeign substance".

Will keep you posted!
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curious!

Postby jimmylegs » Wed Aug 30, 2006 4:46 pm

that's wierd about the foreign substance thing. have u read up on those tests to see what messes them up?
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Postby Chris55 » Wed Aug 30, 2006 6:14 pm

Actually, she just got the test results--doesn't have a clue what they are testing--and hasn't had a chance to get with someone who can help her interpret. She owns her own dance school and they just started back. Very busy--I know, I do the books!

She has a WONDERFUL OB/GYN. She will probably get with him for his help. As soon as I find out anything, I will share.

Again, her symptoms are continuing to resurface in reverse, are much milder and last a very short time and then go away and do not return. She has just started the 3rd phase of her supplement treatment and will finish up in Dec. She is going to sent another urine sample at that time just to see what it shows.

Will keep you posted! Again, thanks for your interest Jimmylegs!
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lab stuff

Postby jimmylegs » Wed Aug 30, 2006 11:05 pm

pretty decent info at http://www.labtestsonline.org/ if you want to look up any of the stuff on the test results.

hey there's a new member here, one clever woman - i told her about u, she is a frustrated mom of daughter with ms, interested in what else they can do besides the drugs. she's interested in vitamin d and so on. so she might private message u!
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Postby Chris55 » Thu Aug 31, 2006 6:29 am

Please let One Clever Woman know she can contact me anytime. Will be more than happy to discuss all the info I have gathered over these last 7 years. And thank you SO MUCH for the website referral. Will be going to it right now. Have a great day!
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yw

Postby jimmylegs » Thu Aug 31, 2006 4:17 pm

hiya, no prob :) hope you can find some good info there, take care
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