We need a dx. for son, please help
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October 15, 2006 at 8:38 pm
Ok. I’ve started many posts here and also many replys. I need some more of your help.
Dell is 2. We already know by a biopsy that he has CIDP. He’s on IVIG every 2 weeks and steriods. The dr. is convinced he has another disease besides the CIDP.
Dell’s neck started getting weak in April/May. The physical therpist says he is not using his neck muscles but his back muscles.
The dr. is running the test for mystenia gravis and a few other diseases that he won’t tell me about (he knows I’d run to the computer).
We are trying to get into see Dr. John Sladky in Atlanta (Emory) for a 2nd opinion on treatment. Please put in a good word so we can get in soon.
My husband and I know Dell is getting worse. It’s not something that’s happening overnight, it’s gradual but he’s NOT improving.
Please help if you have any ideas. I’d be happy to email some of his bloodwork numbers.
Thanks, Lori
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October 15, 2006 at 9:15 pm
hi lori, you might get a pm sent to gene, he keeps a list of drs. i hope and pray they find something treatable for dell. you all are in my thoughts and prayers. i know how you must be feeling, not knowing what is wrong and yet knowing there is something else going on with him. keep us updated on his results.
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October 16, 2006 at 9:45 am
lori,
i suggest you go to the mayo in jacksonville. his prob sounds to complex to me for anything less.
take care, gene
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October 16, 2006 at 6:52 pm
Sorry I can offer nothing more than my prayers… a little to complex, as Gene was saying, for a small town country boy as myself….please keep us posted.
God Bless
Stephen
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