Guest guest Posted February 24, 2002 Report Share Posted February 24, 2002 Jens, The hardest thing about this NF is its complexity and the general ignorance of those in the medical field. I still wonder who is Anne's doctor and case manager. May I suggest that you keep a notebook with cards of the doctors you've seen and would like to see, contact records, current research, info from NNFF and the like and anecdotal info, copies of all doctor reports and testing. It will be very helpful as you coordinate your son's care. Ultimately, the onus is on the parents. Be strong, Jens, because that will keep you appreciating the little guy and enjoying him. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2002 Report Share Posted February 24, 2002 Jens, The hardest thing about this NF is its complexity and the general ignorance of those in the medical field. I still wonder who is Anne's doctor and case manager. May I suggest that you keep a notebook with cards of the doctors you've seen and would like to see, contact records, current research, info from NNFF and the like and anecdotal info, copies of all doctor reports and testing. It will be very helpful as you coordinate your son's care. Ultimately, the onus is on the parents. Be strong, Jens, because that will keep you appreciating the little guy and enjoying him. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2002 Report Share Posted February 24, 2002 Jens, The hardest thing about this NF is its complexity and the general ignorance of those in the medical field. I still wonder who is Anne's doctor and case manager. May I suggest that you keep a notebook with cards of the doctors you've seen and would like to see, contact records, current research, info from NNFF and the like and anecdotal info, copies of all doctor reports and testing. It will be very helpful as you coordinate your son's care. Ultimately, the onus is on the parents. Be strong, Jens, because that will keep you appreciating the little guy and enjoying him. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2002 Report Share Posted February 24, 2002 Okay my ?? are what type of doctor takes care of nf2? (We see genetic doctor tomorrow to plan a course of action for my son). What should I ask? Have others had DNA testing and was it a benefit? They want to discuss MRI the experts told them he does not need it. They are not sure we think it would be a good idea. I also would like him to have a hearing test. I just had mine done and it is the very lowest of normal I am losing my hearing not sure why. Any answers I greatly appreciate. We are so shocked because when we saw doctor last he said he didn't have it but after sending his file out he know says he for sure has it. We did not expect this. Thanks Jens Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2002 Report Share Posted February 24, 2002 Jens, My son goes to a Neurofibromatosis Clinic. He also has a neurosurgeon he sees since he had surgery, a pediatric opthalmologist, and a retina specialist. If your son doesn't go to an NF clinic then he will probably be followed up by a geneticist or neurologist in addition to his eye doctor. Just make sure the doctor is very familiar with NF2 since many aren't. Having the blood test done is a personal decision. Some people don't want to have it done. I wanted it done to verify that indeed my son has NF2 then when his test came back positive I wanted to make sure that the rest of the family was negative. A hearing test would probably be a good idea though your sons hearing is probably fine. Ask the doctors if he can have the MRI and audiogram and how often he will get them. Ask the geneticist to explain the NF2 blood test. Ask the doctor what treatments there will be for NF2 in the future. Your doctor was probably trying to err on the side of caution when he said he thought your son didn't have it. It is all very shocking at first. I hadn't even hear of NF until a year and a half ago, but it does get easier. Take care, Okay my ?? are what type of doctor takes care of nf2? (We see genetic doctor tomorrow to plan a course of action for my son). What should I ask? Have others had DNA testing and was it a benefit? They want to discuss MRI the experts told them he does not need it. They are not sure we think it would be a good idea. I also would like him to have a hearing test. I just had mine done and it is the very lowest of normal I am losing my hearing not sure why. Any answers I greatly appreciate. We are so shocked because when we saw doctor last he said he didn't have it but after sending his file out he know says he for sure has it. We did not expect this. Thanks Jens Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2002 Report Share Posted February 24, 2002 Jens, My son goes to a Neurofibromatosis Clinic. He also has a neurosurgeon he sees since he had surgery, a pediatric opthalmologist, and a retina specialist. If your son doesn't go to an NF clinic then he will probably be followed up by a geneticist or neurologist in addition to his eye doctor. Just make sure the doctor is very familiar with NF2 since many aren't. Having the blood test done is a personal decision. Some people don't want to have it done. I wanted it done to verify that indeed my son has NF2 then when his test came back positive I wanted to make sure that the rest of the family was negative. A hearing test would probably be a good idea though your sons hearing is probably fine. Ask the doctors if he can have the MRI and audiogram and how often he will get them. Ask the geneticist to explain the NF2 blood test. Ask the doctor what treatments there will be for NF2 in the future. Your doctor was probably trying to err on the side of caution when he said he thought your son didn't have it. It is all very shocking at first. I hadn't even hear of NF until a year and a half ago, but it does get easier. Take care, Okay my ?? are what type of doctor takes care of nf2? (We see genetic doctor tomorrow to plan a course of action for my son). What should I ask? Have others had DNA testing and was it a benefit? They want to discuss MRI the experts told them he does not need it. They are not sure we think it would be a good idea. I also would like him to have a hearing test. I just had mine done and it is the very lowest of normal I am losing my hearing not sure why. Any answers I greatly appreciate. We are so shocked because when we saw doctor last he said he didn't have it but after sending his file out he know says he for sure has it. We did not expect this. Thanks Jens Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2002 Report Share Posted February 24, 2002 Jens, My son goes to a Neurofibromatosis Clinic. He also has a neurosurgeon he sees since he had surgery, a pediatric opthalmologist, and a retina specialist. If your son doesn't go to an NF clinic then he will probably be followed up by a geneticist or neurologist in addition to his eye doctor. Just make sure the doctor is very familiar with NF2 since many aren't. Having the blood test done is a personal decision. Some people don't want to have it done. I wanted it done to verify that indeed my son has NF2 then when his test came back positive I wanted to make sure that the rest of the family was negative. A hearing test would probably be a good idea though your sons hearing is probably fine. Ask the doctors if he can have the MRI and audiogram and how often he will get them. Ask the geneticist to explain the NF2 blood test. Ask the doctor what treatments there will be for NF2 in the future. Your doctor was probably trying to err on the side of caution when he said he thought your son didn't have it. It is all very shocking at first. I hadn't even hear of NF until a year and a half ago, but it does get easier. Take care, Okay my ?? are what type of doctor takes care of nf2? (We see genetic doctor tomorrow to plan a course of action for my son). What should I ask? Have others had DNA testing and was it a benefit? They want to discuss MRI the experts told them he does not need it. They are not sure we think it would be a good idea. I also would like him to have a hearing test. I just had mine done and it is the very lowest of normal I am losing my hearing not sure why. Any answers I greatly appreciate. We are so shocked because when we saw doctor last he said he didn't have it but after sending his file out he know says he for sure has it. We did not expect this. Thanks Jens Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2002 Report Share Posted February 25, 2002 My Aunt and he children have has had the NF2 gene blood test. It came back negative for every one of them.. We obviously have NF2 but the defective gene is not were is is supposed to be. The Dr could not understand why it came back negitive.. I have not had the test... Bobfather "Children are a gift from a Bob" -rugrats -----Original Message-----From: & Norwood Sent: Sunday, February 24, 2002 11:01 PMTo: NF2_Crew Subject: Re: help Jens, My son goes to a Neurofibromatosis Clinic. He also has a neurosurgeon he sees since he had surgery, a pediatric opthalmologist, and a retina specialist. If your son doesn't go to an NF clinic then he will probably be followed up by a geneticist or neurologist in addition to his eye doctor. Just make sure the doctor is very familiar with NF2 since many aren't. Having the blood test done is a personal decision. Some people don't want to have it done. I wanted it done to verify that indeed my son has NF2 then when his test came back positive I wanted to make sure that the rest of the family was negative. A hearing test would probably be a good idea though your sons hearing is probably fine. Ask the doctors if he can have the MRI and audiogram and how often he will get them. Ask the geneticist to explain the NF2 blood test. Ask the doctor what treatments there will be for NF2 in the future. Your doctor was probably trying to err on the side of caution when he said he thought your son didn't have it. It is all very shocking at first. I hadn't even hear of NF until a year and a half ago, but it does get easier. Take care, Okay my ?? are what type of doctor takes care of nf2? (We see genetic doctor tomorrow to plan a course of action for my son). What should I ask? Have others had DNA testing and was it a benefit? They want to discuss MRI the experts told them he does not need it. They are not sure we think it would be a good idea. I also would like him to have a hearing test. I just had mine done and it is the very lowest of normal I am losing my hearing not sure why. Any answers I greatly appreciate. We are so shocked because when we saw doctor last he said he didn't have it but after sending his file out he know says he for sure has it. We did not expect this. Thanks Jens Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2002 Report Share Posted February 25, 2002 VERY WELL PUT VICKI - I HAVE BEEN TOSSED AROUND WITH DOCTORS. STARTED WITH NEUROSURGEONS AND NOW MY NF2 DOCTORS ARE: OTO AND GENETICS. AND, OF COURSE, I AM NOW A CONSTANT COMPANION OF THE OPTHAMOLIGISTS - DONT KNOW HOW TO SPELL IT EITHER! THE DOCTOR I NEED TO CHECK IN WITH YET IS THE VET (BARK!) JANE Re: help >Jens, >The hardest thing about this NF is its complexity and the general ignorance >of those in the medical field. I still wonder who is Anne's doctor and case >manager. May I suggest that you keep a notebook with cards of the doctors >you've seen and would like to see, contact records, current research, info >from NNFF and the like and anecdotal info, copies of all doctor reports and >testing. It will be very helpful as you coordinate your son's care. >Ultimately, the onus is on the parents. Be strong, Jens, because that will >keep you appreciating the little guy and enjoying him. Vicki > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 Jane, Bark made me laugh. Thanks for your light touch to our difficult NF2 situation. What a spirit you have. Hugs, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 Caterine, 1st, you are not olddddddd, sheesh. 2nd, wish I could help but sounds like your ISP is messing up On the OZ list on the " PLEASE READ " post we were just posting our arrival and departure dates for marcus info. Dont knowwhy you cant read except maybe postthat are typeed in html (pretty colors and neat fonts) and not plain text. catherine wrote: > BIG PROBLEM CREW ALL OF THE RECENT POST ARE COMING IN TWICE > ANY SUGGESTIONS? REMEMBER I AM THE OLD LADY AND NOT VERY COMPUTER > KNOWLEDGEABLE > > CATHERINE > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 THANKS CINDY FOR THE COMPLIMENT AND MAYBE YOUR ARE RIGHT AS TO THE PROBLEM. I JUST WANTED TO BE SURE I DIDN'T MISS ANYTHING IMPORTANT CATHERINE > Re: HELP > > > Caterine, 1st, you are not olddddddd, sheesh. 2nd, wish I could help but > sounds like your ISP is messing up On the OZ list on the " PLEASE > READ " post > we were just posting our arrival and departure dates for marcus > info. Dont > knowwhy you cant read except maybe postthat are typeed in html > (pretty colors > and neat fonts) and not plain text. > > catherine wrote: > > > BIG PROBLEM CREW ALL OF THE RECENT POST ARE COMING IN TWICE > > ANY SUGGESTIONS? REMEMBER I AM THE OLD LADY AND NOT VERY COMPUTER > > KNOWLEDGEABLE > > > > CATHERINE > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 THANKS CINDY FOR THE COMPLIMENT AND MAYBE YOUR ARE RIGHT AS TO THE PROBLEM. I JUST WANTED TO BE SURE I DIDN'T MISS ANYTHING IMPORTANT CATHERINE > Re: HELP > > > Caterine, 1st, you are not olddddddd, sheesh. 2nd, wish I could help but > sounds like your ISP is messing up On the OZ list on the " PLEASE > READ " post > we were just posting our arrival and departure dates for marcus > info. Dont > knowwhy you cant read except maybe postthat are typeed in html > (pretty colors > and neat fonts) and not plain text. > > catherine wrote: > > > BIG PROBLEM CREW ALL OF THE RECENT POST ARE COMING IN TWICE > > ANY SUGGESTIONS? REMEMBER I AM THE OLD LADY AND NOT VERY COMPUTER > > KNOWLEDGEABLE > > > > CATHERINE > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 THANKS CINDY FOR THE COMPLIMENT AND MAYBE YOUR ARE RIGHT AS TO THE PROBLEM. I JUST WANTED TO BE SURE I DIDN'T MISS ANYTHING IMPORTANT CATHERINE > Re: HELP > > > Caterine, 1st, you are not olddddddd, sheesh. 2nd, wish I could help but > sounds like your ISP is messing up On the OZ list on the " PLEASE > READ " post > we were just posting our arrival and departure dates for marcus > info. Dont > knowwhy you cant read except maybe postthat are typeed in html > (pretty colors > and neat fonts) and not plain text. > > catherine wrote: > > > BIG PROBLEM CREW ALL OF THE RECENT POST ARE COMING IN TWICE > > ANY SUGGESTIONS? REMEMBER I AM THE OLD LADY AND NOT VERY COMPUTER > > KNOWLEDGEABLE > > > > CATHERINE > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2003 Report Share Posted April 6, 2003 Hi , Health Care Insurance is normally regulated through each State. Check your state Insurance Commission website. ie, Florida and Texas have good sites: Texas Dept. of Insurance-Consumer-Your Health Care Coverage http://www.tdi.state.tx.us/consumer/cbo05.html I don't know, based on your circumstances, if the federal Health Insurance Portability Act would apply. The following law firm had a good description: " Legislators at Work " Hollaway & Gumbert http://www.houstonlaw.com/htmlversion/article1.htm Have you checked with your Dr. about pre-existing condition as it relates to your fibroids? If the health care plan enables you to treat your condition within a year or 2 can you wait that long? Have you also considered alternative treatment options for your fibroids besides a hysterectomy? Depending on the size, location, and type of fibroid you may only need minimal treatment. Take care, Marsha V. Weaver Tallahassee, FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2003 Report Share Posted April 6, 2003 Hi , Health Care Insurance is normally regulated through each State. Check your state Insurance Commission website. ie, Florida and Texas have good sites: Texas Dept. of Insurance-Consumer-Your Health Care Coverage http://www.tdi.state.tx.us/consumer/cbo05.html I don't know, based on your circumstances, if the federal Health Insurance Portability Act would apply. The following law firm had a good description: " Legislators at Work " Hollaway & Gumbert http://www.houstonlaw.com/htmlversion/article1.htm Have you checked with your Dr. about pre-existing condition as it relates to your fibroids? If the health care plan enables you to treat your condition within a year or 2 can you wait that long? Have you also considered alternative treatment options for your fibroids besides a hysterectomy? Depending on the size, location, and type of fibroid you may only need minimal treatment. Take care, Marsha V. Weaver Tallahassee, FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2006 Report Share Posted September 13, 2006 Hey guys, As you know, I have a pretty bad case of vulvodynia. Whan I look at my labia inside, it is red and irritate (and dry) all around - like where the lips would rub together when my legs are closed. I am doing biofeedback, using the estrogen patch and compounded estradiol (I got the bi-est like you recommended, Dee, compounded in coconut oil.) There are little white spots along the edge of the labial lips - really small - have you ever seen that? I am taking my daughters to NYC tomorrow for the weekend and I am so scared that I won't be able to walk. Does anyone have any ideas? How long should this take? My doctor said it's the most severe case she's seen. Any words of hope? Help, Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2006 Report Share Posted September 13, 2006 Hey Anne, You should get tested for lichen sclerosis.... mine started as little round white spots and eventually grew to larger white spots. Help Hey guys,As you know, I have a pretty bad case of vulvodynia. Whan I look at my labia inside, it is red and irritate (and dry) all around - like where the lips would rub together when my legs are closed. I am doing biofeedback, using the estrogen patch and compounded estradiol (I got the bi-est like you recommended, Dee, compounded in coconut oil.)There are little white spots along the edge of the labial lips - really small - have you ever seen that?I am taking my daughters to NYC tomorrow for the weekend and I am so scared that I won't be able to walk. Does anyone have any ideas?How long should this take?My doctor said it's the most severe case she's seen.Any words of hope?Help,Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2006 Report Share Posted September 13, 2006 HI Anne, is correct that LS often does have the white patches that sort of look like crinkled or wet cigarette paper. So I wasn't too sure if yours had that look or if it was more like tiny little pinhead whiteheads, sort of more pimply. But it is a good thought that it 'might' be LS. But what's great is the Estrace or estrogen will truly benefit that as well hon. Do you have itching along with it or irritated or itch around the anus as well? IF you had that in addition that would be more signs of LS too. Although some do NOT have the itch but is more common. Dee~ Quote Link to comment Share on other sites More sharing options...
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