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• 3 year old RP, Ataxia, Hearing Loss, Speech problems
• Posted: 2008-04-10 15:04:10 By Kindy F
• Hi - we just found out our son (3.5 years old) has an extremely severe case of RP. He has had a form of ataxia (unknown) since he was 8 months old. He can walk with assistance, is very strong, but walks and balances like he is drunk. He has a hearing loss that comes and goes (some days good - some days bad - the same as his walking). He has some speech delay but he uses sign language with no problem. He is happy, loving, friendly, and has no diabetes or any other sickness. It is unclear what is really wrong with him overall. I'm looking for other parents with children who have similiar problems. Even though they said his ERG tests are totally flat - he appears to see lots of things both near and far. So we are basically confused and would like to talk to anyone else with kids who are in this position. Thank you. Kacey
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• north alabama
• Posted: 2008-04-10 11:36:33 By mark j
• would like to start a RP support group in the north Alabama area. Please respond!!!
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• how is it possible
• Posted: 2008-04-08 15:05:15 By Robert W
• I have been diagnosed with RP. The only person in my family that has this condition is a third cousin. Can anybody explain to me how i inherted this. No one else in my family has this but her. and i am very confused on this condition.
  
  Thank you
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• rp looking for answers
• Posted: 2008-04-06 20:52:59 By Despina G
• Good eveing to all,my wife has rp and was diagnosed at 27 years old and was told 10 to 20 years left of sight, no at 40 she has lost a lot of vision but can still see and still functions but we feel like time is of the essance.I try to make sure everything is moved out of the way of here,cabinets are shut ,etc.now she wants to see a holistic doctor about this because she feels they will do better.Please any thoughts? she does take vitamin palmitatae 15,000 iu
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• HELP
• Posted: 2008-04-06 20:02:14 By felix z
• WHO IS THE BEST DOCTOR FOR RP ??
  
  
  please help
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• Diamox
• Posted: 2008-04-04 15:24:16 By Nikki s
• So has anyone else been on 1000 mg of diamox? if so did you experience insomnia? i have it really bad its so exhausting. and have you had the numbness so bad in your feet that it hurts? i thought side affects were suppose to go away. i have been on it for over a month and the tingling and everything else is just as bad as when i started....i am now on 750 mg. still same problems...
  
  thanx
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• Fluoxetine
• Posted: 2008-04-04 05:44:53 By Robert H
• Darran,
  
  Do you know if this drug Fluoxetine has any known side effects that could harm my vision or progress my rp faster?
  
  
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• What can i collect and how much?
• Posted: 2008-04-03 09:03:18 By Tim B
• I am 37, have RP, very very minimal side vision, pretty good straight forward vision with my glasses on. I work in front of a computer all day doing CAD engineering. I make about 45-50K a year.
  
  What do i qualify for, disability, SS? Since I am working now, i probably dont qualify for anything. But say i got laid off and out of work. Should i make an attempt to collect for my diability and how much would i get? i have a house mortgage, etc...so i need about the same income.
  
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• level 3 polar cataract?
• Posted: 2008-04-02 23:03:54 By Nikki s
• oh "YAWN"i tell ya i am so sick of going to the eye dr. i went back once again yesterday. as you might know i have been going like once a month cuz he allllways wants to see me back (money). i am still taking the diamox instead of 1000 mg i am taking 750mg. and i would assume the next time i go in he will put me on two then tell me to come back in another month then when i come back again he will put me on one then see me in another month..i tell ya what its draining the pocket book fast!!! so noooooooow he tells me well you have a polar cataract developing in your left eye. i asked him what level (thanx for that info darran:) and he told me it was a 3 and so i said well how do we know if the surgery would woek and he told me about the little thing that have that they can tell and blah blah blah and i told him lets just leave it alone for now cuz i really cant afford it.. so he starts looking through his paper work and before he said anything i said yes i have insurance but it doesnt cover everything and he just goes ohhh yeah... hahah whatever.. sooooooooooo now i dont know what to do cuz like i have said before my vision was better before i even started seeing this guy and letting him do these injections grrrr...so has anyone heard of polar cataract before? i mean he explained it to me but dang i dont know if i wanna mess with it!!!
  sorry for the book:)
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• north alabama southren tenn.
• Posted: 2008-04-01 22:25:48 By mark j
• looking for PR's in north alabama and southren Tenn.
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• Laser surgery
• Posted: 2008-04-01 18:11:10 By Clemente W
• Hi there!
  Im 19 and iv have RP since I remember. I was wandering if there is any kind of problem for people like us to have a laser surgey for miopia or actismatism, or maybe if its recomended to leave the eye untouched for posible futures cures for RP. If someone out there know anything please respond
  
  Thanks
  Clemente
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• ? Different message boards?
• Posted: 2008-03-31 18:12:10 By Vicki T
• Has anyone else noticed there is another RP message board on this FFB website with totally different posts? Why is that, I wonder? Darran Z, you post on both, I noticed. Maybe you can answer my question. Just curious, also others might like to read the other one, too.
  Vicki T
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• Different message boards?
• Posted: 2008-03-31 17:28:21 By Vicki T
• Did anyone else realize there is another RP message board on this FFB website? I'm confused. I happened to discover a different one by clicking on the menu to the left,"Retinitis Pigmentosa", then clicked on "message board" and realized it was a different one than this. Hmmmmm...Didn't realize that. Darren, I've noticed you have posts on both. Why are there 2 different ones? Just curious.
  Vicki T
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• Coping with RP
• Posted: 2008-03-31 16:57:22 By Robert W
• Hi, I have had such a hard time trying to cope with my diagnoses. Everything I dreamed about is like gone. What are some ways that can help me better cope. This has all made me really depressed. I currently in the military. Thats not going so good. I am getting no support or guidance or anything from that. If anything its making me feel worse. Is there any advise that anybody can give me to help me get my back on track. Would be greatly appreciated.
  
  Thank you,
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• We are so confused and frustrated
• Posted: 2008-03-31 13:05:28 By LaTuana M
• Hi,
  Our daughter was diagnosed with RP when she was 10, 3yrs ago by a local specialist. We traveled to OHSU Casey Eye Inst. and they did a ERG and it was normal. She was diagnosed there as having Pigmentary Retinopathy of unknown origin (she has the granules developing on the back of her retinas.). She also has some minor periphial loss from the vision field test. Her acuity is at 20/25 both eyes. She also is photophobic (light sensitive).
  Her grandmother has RP as well as her great aunt. Her father is starting to suffer night vision but does not want to be checked at this time.
  O.K. this is where we were at 3 years ago now to the present. She just had a checkup last week and the opthamologist found small cortical cataracts in both eyes that developed over a 10 month period. I was told by the Opthamologist that these are not normal for RP and to see the specialist up in OHSU soon. Has anyone out there also been diagnosed with cortical (front of the eye) cataracts and have RP?
  Help. I am so confused and frustrated because the answers seem so incomplete from the Opthamologist. As a mom, I want to control a situation that seems so out of control. I am trying to count our blessings that she can see pretty good right now, but I don't know if this new development means we need to start planning for visual aids sooner rather than later. I would appreciate any advice. Thank you.
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• north alabama
• Posted: 2008-03-31 12:56:04 By mark j
• anyone from north alabama or close by!!!!!!!!
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• TREATMENT FOR RP
• Posted: 2008-03-31 12:18:45 By HAMZA A
• HEY EVERYONE CHECK THIS VID OUT IS THIS A MONEY MAKING SCHEME IT'S ALL ABOUT WELLSPRING CLINIC
  
  http://www.youtube.com/watch?v=1nvYxhFfBxQ
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• anyone in iowa rp
• Posted: 2008-03-30 13:35:42 By jana p
• anyone out there with rp in iowa have 5 year old with rp. thanks janap
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• took steps
• Posted: 2008-03-30 10:45:56 By jana p
• to everyone that replyed to my message thankyou. Well i took some steps for our son, he will be going to a low vision clinic in april, they will be testing him on his abilities, we will be staring brail when he starts kindergarten and then in may he will be going for a check up in ia city, hopefully they will have our blood work done so we can have somekind of idea of which RP he has. we are taking things one day at a time. i tod him about his rp (he's 5) i dont know if he understands but when i said you have rp hes responce was he thought he had some kind of pig in him ha ha. we laughed about it, they are so cute. i will keep telling him. thank again everyone. janap
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• Retinitis Pigmentosa in Rural AP
• Posted: 2008-03-30 09:30:07 By Anthony D
• Hello everyone,
  Im Dr.Anthony Vipin from Warangal, India. I'm a Post-Graduate student in Ophthalmology. I have seen many families being affected with Retinitis Pigmentosa, back here in our Hospital. It pains me to see the young patients being affected, and the incidence is also high due to the high rate of consanguineous marriages.
  I request you all to help us in anyway, through advice and support, what can i do for the patients to help them recope with their life. how can we rehabilitate them? please help me do something for these patients. The most challenging would be to rehabilitate them in a rural setup.
  how far are low vision aids helpful? Please advice. thank you.
  regards
  Dr.Vipin
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• dose smoking effect Retinitis Pigmentosa
• Posted: 2008-03-29 19:30:24 By ali k
• dose smoking and drinking effect Retinitis Pigmentosa and than u
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• help please from mo
• Posted: 2008-03-28 21:27:38 By mary e
• i need to know what kind of things in missouri are out there to help as for getting canes training on using them anyone out there know ?? where to go i have whole family that has retinitis and none of them know where to go or what to do the 2 oldest nephews are pretty bad with it they inhartited my fathers canes well my son now was prenounced with big shocker huh not but we dont know what kind of services are out there or ware to look any clue where to look would be helpful thanks
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• PDE6A gene
• Posted: 2008-03-28 20:04:32 By maris s
• Has anyone heard of the gene PDE6A? can one have both RP and CME? have researching on the topic and they all in essay form.
  Please help.
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• FLOATERS
• Posted: 2008-03-28 18:33:39 By HAMZA A
• DOES ANYONE SUFFER FROM FLOATERS I HAVE THIS 1 ANNOYING FLOATER IT COMES IN 2 MY VISION AND THEN GOES I SEEM TO THINK ITS A FLOATER BUT ITS DIFFRENT LOL.
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• Any potential for my 14 y/o to drive?
• Posted: 2008-03-27 18:58:38 By Piper P
• Hi All,
  My son Nathan was born with RP and finally diagnosed at the age of 6, I have never held anything back from him about his disease, he functions very well, and has learned white cane, and braille, however one of the most "important" milestones in a teenagers life is about to hit and I want my son to be able to drive, Im not ignorant to the fact there would be restrictions, however does anyone have any suggestions on where I can go or whom to ask about accommadations that can be made in order to allow him to drive? Or am I just fooling myself altogether?
  Piper
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• anyone heard of wellness spring clinic?
• Posted: 2008-03-26 04:15:22 By randy m
• Hi Guys n Gals,
  
  anyone heard of this wellnesspring clinic? I was thinking this might have been brought up in the forum earlier but the search resulted in negative.
  
  
  So i was wondering if anyone has heard of this place?
  
  http://www.tcmrp.com/wellspringcasereport.htm
  
  
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• Unemployment and SSDI?
• Posted: 2008-03-24 12:29:11 By Sandy H
• Hi I'm kida new. I would like some input if anyone has any info. I work Part-time in production. This place provides work for the blind and vision impaired. I have RP. I am layed off ALOT due to government contracts. Anyway I was told because I collect SSDI I cannot collect Unemloyment. I thought they were 2 very different things. Thanks for any input.
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• Northern Virginia Chapter
• Posted: 2008-03-24 11:43:54 By Davida L
• We have a wonderful chapter if you are in the Northern Virginia area, and would like more information, please contact me
  
  I was diagnosed with RP about 20 years ago and am currently participating in one of the FFB cliniclal trials. You can reach me at ddluehrs@aol.com
  or 703-707-1992
  Davida Luehrs
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• medical insurance
• Posted: 2008-03-24 02:25:13 By randy m
• Hi All,
  
  I am visiting united states for 6 months from europe. my company has done my medical and vision insurance. I was wondering if i could consult a retina specialist in US while i am here and still be covered by my insurance.
  
  Do companies usually cover diseases that one has basically from birth? They did not ask me to declare it anywhere, i was automatically insured with any tests. Do i have to specially declare to the insurance comapny that i have RP?
  
  Thanks and Regards!
  
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• Home design for visually impaired
• Posted: 2008-03-22 07:30:12 By William K
• Any one know of any god websites/organizations concerning home design for the visually impaired?
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