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• when is trial done
• Posted: 2008-02-16 21:51:51 By Nikki s
• i was on neurotechs website and it said they are gonna tell results by the end of this year..i thought the implants were gonna be in for two years for some people..i wonder when it will finally be available to the public
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• Lutein and DHA
• Posted: 2008-02-16 19:24:27 By Jorge P
• Dear Colleagues:
  
  I want to know if you have a good experience with this 2 products: Lutein and DHA.
  What is the correct dosage of use?
  Can I take this products for a long period of time?
  Do you know other products recommended for RP (homeopathy or natural products)?
  Im 61 years old.
  
  Thanks...
  
  
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• late stage rp and cntf
• Posted: 2008-02-16 18:40:26 By Nikki s
• anyone with late stage rp in the cntf trial showing any improvements at all? thanx
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• What can we physically do to help
• Posted: 2008-02-16 18:30:45 By Madison D
• Madison is 12 years old and has RP since age 9. I have written about her future (Vet.) but now my question is 'What can I do to physically help her' such as rearranging furniture etc.. We only want to keep her life as "normal" as possible. Does anyone have suggestions that have been tried and proved?
  Thanks! Jan (Madison's mom)
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• lasik surgery
• Posted: 2008-02-15 15:59:22 By Tim B
• Hi, has anyone had corrective eye surgery? i have RP, very little peripheral vision, but my central vision is good with glasses or contacts. Wondering if corrective eye surgery would do any good? Anybody have any input?
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• A few questions
• Posted: 2008-02-13 21:19:14 By Janet C
• Hi There, I am 37 years old, diagnosed with RP when I was 18. I have had trouble with CME the past 10 yrs (just received an injection today), and found out results from my latest VF . I am 30 deg. out of 180 deg. My Dr. recommended " drving only if I have to". I am wondering what is the degree that people usually stop driving? I also wanted to know what success, if any, anyone had with the Vit A Therapy? I have 2 small children, and today the reality of the disease came crashing down on me. I am sure these topics have been discussed many times before, but I am knew to this wonderful website, and would love to hear back from anyone!
  Janet
  Richmond, VA
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• My daughter wants to be a vet
• Posted: 2008-02-12 21:19:15 By Madison D
• My 12 year old daughter was told 2 years ago she has RP. There has been no change in her vision in the past 2 years. She sees a specialist twice a year and only sees 40 degrees vs the normal 180degrees. She LOVES animals and has always wanted to be a vet. What are her odds that she can be successful for a future vet due to her disease? Anyone else with RP in the medical field? Our family supports her in everything she does. She is a cheerleader,plays soccer, very active in her church and has energy to spare. We noticed a change in her soccer playing over the past year. She seems to be at a loss if she cannot see the ball head on but this has not stopped her love for the game. Thanks for any hope for her love to be with around animals. Madison's mom
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• Federal Grants or Stipends?
• Posted: 2008-02-12 16:15:56 By Michael Z
• Besides getting SSDI/ or your own work disability, are other grants or stipends possible to get on a monthly basis. For example, money for transportation, food, etc...
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• Do you still remember...?
• Posted: 2008-02-11 18:24:10 By Luis G
• Hi everyone,
  
  Can you believe me when I tell you that I cannot remember with precición what I was able to see before I was diagnosed!!!??? I mean, I feel as if it's been a long long time since I started to lose my sight. Very often I ask my wife "Was I able to read this or to see that?". I hardly recognise a face until he or she is very close to me. Immediatly, I wonder "Was I able to recognise this man or woman from that distance under that condition of light?" Simply it's difficult for me to answer this question.
  
  . Well, I just would like to hear from you and know what you think.
  
  Luis G
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• Retinitis Pigmentosa and Employment
• Posted: 2008-02-11 14:00:02 By Brad R
• I currently have RP and I work as a Network Administrator. It is becoming more difficult to see the computer screen, no matter what the size of the screen or charactera are. I was wondering what others with RP are doing for employment and how it is working out for them. I am contemplating going back to school and I am curious as to what others are doing for employment with RP. Thanks for any and all information.
  
  Thanks,
  Brad R
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• CME
• Posted: 2008-02-10 19:45:27 By Nikki s
• Alright well my dr. put me on trusopt now. i went in friday and he said the pressure is still up in my right eye. dang i wish i would have never started getting the injections in my eye cuz now i have more problems than when i started!!! before i just had really blurry vision now i have a floater on top of the blur in right eye and my left eye is back to being super blurry. he wants me to come back in april for more shots but i dont think i will get them. i will just go back to having blurry vision all the time and plus the injections are 1000 bucks!! for each eye! my insurance dont cover all that and i have been going to eye dr. like every month and i cant afford it anymore! now im worried about the pressure in my eye causing optic nerve damage! never had high pressure before and i sware my left eye is worse than it ever was before i started going!!! grrrrrr silly me to think things would work out..hope the trusopt takes the pressure away
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• Vitrectomy Surgery
• Posted: 2008-02-08 17:50:51 By Peter F
• Hey Darran Z good to see you are still here. Would love to debate a little on Stem Cell and SPP NAU stuff in another post.
  If you remember my son Max was diagnosed about 8 years ago with RP and we had some lively debates on vitamin regimens.
  The end of 2007 was good news with Max retaining his central and peripheral vision with little change over almost two years.
  2008 though bought another challenge as his Retina tore and fluid seeped behind causing detachment. I did not know that a side effect of RP is thinning of the Retina. He had surgery three weeks ago and with a Gas Bubble method the operation was successful. The bad news is that during the examinations another weak spot was discovered and fluid is seeping behind that spot. He is back in surgery again at 6 a.m. tomorrow.
  Has anyone information on this type of surgery? We have a choice of the Gas Bubble being injected into the eye again or the Silicon Oil Bubble. The success rate of either operation appears to be the same the only difference is the recovery. The Gas Bubble requires staying face down 10 –14 days or more then the Bubble slowly dissipates with vision slowly returning after several weeks. The Oil Bubble method allows you to be active two after days after the operation but you cannot see out of that eye for 3 – 4 months and requires a second operation to remove the Oil.
  Anyone have any experience or thoughts.
  Peter F
  
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• It has been 2 years!
• Posted: 2008-02-08 08:39:02 By Katie V
• Hello all. I don't post often but I come in here regularly to read your posts. I do have contact with some members of this site and they are incredible.
  
  I was just thinking that it has been 2 years since my daughter Meghan was diagnosed with RP. WOW time flies. She is going to be 13 next month and doing fabulous. She is wonderful and has really made RP easy for us.
  
  Meghan has 20/25 central vision without correction, strong color vision and 40 degrees peripheral left. She is totally night blind but it does not bother her at all. She plays soccer, sings and just loves life. We volunteer with the Canadian FFB ( we live in Ontario Canada) and the Ride for Sight. We feel it is important that we are involved in helping raise money for research. Meghan is under the care of a fabulous Dr at the famous Toronto Sick Children's hospital. We do believe she will see a treatment or cure in her lifetime. Now whether it helps her we won't know.
  
  I guess after her RP diagnosis I thought that life was over as we had known it. Well it is not, different but not bad . RP **** but it has changed us in a good way. We don't sweat the small stuff anymore. We travel waaaaaaaaaaay more with our girls, we volunteer in the community ALOT and we do not take things for granted. RP is obviously not what we wanted for Meghan. She will have her issues and troubles because of it. But in the meantime we do not enable her or let her use that as an excuse. I truly believe she is going to be just fine.
  
  Anyway I just wanted to let you all know that after 2 years we are still here. Sometimes life just kicks you in the butt and you realize you never know what is going to happen. I guess that is what makes it interesting.
  
  Thanks everyone for you posts and thoughts over the years
  
  Cheers
  
  Katie
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• CME (Cystoid Macular Edema)
• Posted: 2008-02-07 17:28:41 By Christy P
• Does anyone have both RP and CME? I have CME now in both eyes. It's left me with a central blind spot and 20/400 vision in my right eye and now it's in my left so I'm very nervous. I tried the injection in my right eye but unfortuantely it was after the damage had been done and the CME came back. Has anyone found any treatment that works and maintains the acuity?
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• CME Problems
• Posted: 2008-02-06 13:02:16 By Larry G
• I've had chronic CME for several years now. I've been on diamox sequels, trusopt and nevanac drops at different times. All have stabilized the CME so it doesn't get worst. But all have caused me different side effects and that's why I go from one to the other. I'm currently on diamox pills and we will see how long they last. Anyway, everyone reacts differently so I suggest trying all of the above at one time or the other to see what works best for you without causing problems.
  
  Larry
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• SSDI and work
• Posted: 2008-02-05 18:58:44 By John T
• I realize each state is different but can anyone tell me the rules for SSDI in your state. About how much does a person receive in SSDI eevery month and how much money can you make if you continue to work? I'll be moving to MN and might have to go this route for the first time.
  thanks,
  John
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• RP / Autoimmune disease
• Posted: 2008-02-05 16:26:50 By AM N
• Hello everyone,
  
  There are some theories floating around out there that RP could be an autoimmune disease.
  
  What do you think? Before you dismiss the idea remember ulcers were only recently discovered to be an infection and treatable with antibiotics. This went against popular belief and science at the time.
  
  Do any RPers have an autoimmune disease (arthritis, rheumatoid, lupus, sjogrens, etc.) that started before the age of 50? I chose the age 50 because arthritis is considered autoimmune but it is also becomes more prevalent as we age.
  
  Of course this is not a scientific survey; I am just curious and would love to hear your feedback.
  
  Thanks.
  
  Anna Marie
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• I need help with my daughter
• Posted: 2008-02-03 14:42:41 By Rochelle M
• This is my first e-mail on this site.
  
  My daughter now 28 was diagnosed with RP at age 5 by Dr. John Heckinlively at the Jules Stien Eye Institute at UCLA Medical Center. Due to the fact that we could not find another relative on either side of the family with any systems related to RP, I took her to Loma Linda Universtiy and the Retina Institute of Orange in Calfornia for a 2nd and 3rd opinion. LLU took Dr. Heckinlivley's diagnosis and Dr. Ruper at the Insistute said she did not have RP and asked if I had tramua during my pregnancy (which I had at 6 months). He told us in his opion she had permanent damage spots to her Retina and they would not get any better or any worse. I chose to continue her annual check-ups with Dr. Heckinlively as he is known to be the best in his field. He told us that his best guess was that she would begin to loose periphial vision in late high school years and be blind some time in college. (she already had night blindess as a child) My daughter continued to see him through High School and he continued to state that there was not much change. We began to feel secure that maybe Dr. Ruper was correct in his diagnosis. Dr. Heckinlively has since moved on to the east coast. My daughter just recently began having "floaters" (in both eyes and one flash) and very blurry vision. She went to see our normal opthalmologist and he told her as they were floaters that her mind would eventually adjust and they would disappear. It has been 5 months and they are worse. We saw our Doctor again to which he said she had small blood dots and a white line through on retina. He sent us to a Rentina Specialist locally who agrees with the RP diagnosis, told her it was not worth surgery to correct the floaters and she would just have to live with it, but did not sit her down and tell her what to expect. He did do a retinal thikness test to which he said was normal. My daughter is in denial that she has RP. I have encouraged her to go see the replacemnet Dr. at Jules Stien as all her records with many ERG's , Goldman fields ect are there. Should I contact him prior to her appoinment to ask that he be straight and realistic in telling her what she can expect for her future. I am really worried as she is newly married and is planning to be pregnant soon and I don't believe she and her husband are aware of the facts I have read regarding being a mother with RP. I have a 29 year old daughter with no signs of RP at all. (same parents for both girls) When I read on your web site that the average age for blindness is 40 (not college age) I realized we are NOT out of the woods. What do recomend for me and my daughter.
  
  Thank you for your time and participation on this site. It is so helpful.
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• Colors and The Weather
• Posted: 2008-02-01 21:36:18 By Michelle W
• Is an inability to tell whether the sky is blue or cloudy related to a retina difficulty? Our daugther can not tell what color the sky is most of the time and often mistakes darker clouds for blue sky. Recently, she has also been having trouble telling the difference between blue and purple and red and pink. She also has trouble with blue/green. She has the most trouble telling colors on clothing. I haven't noticed the same thing with crayons and such.
  
  She recently did poorly on the cone adaptation test and tonight she did not see that I was handing her an object when we were in the van at night. So it appears she does have night blindness but apparently more tests need to be done.
  
  Thanks!
  
  Michelle
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• Visions 2008 - Washington DC
• Posted: 2008-02-01 13:37:43 By Brad R
• I am in the process of signing up for the Visions 2008 seminar that will be held in Washington DC. I would like to know if anybody has been to one of these type of seminars or is going to this one, and how they liked it? I am very anxious to go and network with others with RP and to learn more about advancements and other news.
  
  Brad
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• Anyone with RP in Charlotte NC.??
• Posted: 2008-02-01 10:20:06 By Denielle C
• Hi my name is Denielle and I was recently diagnosed with RP.I know alot about it because my sister has it, she is 39 and im 33.She was a teen when she found out she had it.A year ago her 19 year old daughter was diagnosed with RP also.Me and my other sibling's were never tested for it.But the past couple years my night vision has gotten horrible!!So a couple month's ago I went to a specialist and was told my eyes are so bad I shouldent drive at night or in the day!I have 3 children ages 5,9,13 who are going for tests in the next couple weeks.I pray they don't have it.So far they show no signs of having it.My nine year old seems to need glasses to see the board at school but she hopefully is just near sited!
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• Anyone with RP in Charlotte NC.??
• Posted: 2008-02-01 10:20:02 By Denielle C
• Hi my name is Denielle and I was recently diagnosed with RP.I know alot about it because my sister has it, she is 39 and im 33.She was a teen when she found out she had it.A year ago her 19 year old daughter was diagnosed with RP also.Me and my other sibling's were never tested for it.But the past couple years my night vision has gotten horrible!!So a couple month's ago I went to a specialist and was told my eyes are so bad I shouldent drive at night or in the day!I have 3 children ages 5,9,13 who are going for tests in the next couple weeks.I pray they don't have it.So far they show no signs of having it.My nine year old seems to need glasses to see the board at school but she hopefully is just near sited!
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• Seeing stars
• Posted: 2008-02-01 08:31:18 By Mateo G
• I am 23 years old, and I was diagnosed with RP when I was 12. My RP was inherited from my mother, and along with other conditions, it has caused very rapid deterioration of my eyesight. One thing that has always bothered me is that I have never been able to see the stars; I can see some bright ones, but when my friends see a sky full of stars, I maybe see three or four. Does anyone else experience this? I can't even remember the last time I could see the stars; I must have been very young.
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• diomox
• Posted: 2008-01-31 20:06:54 By judy a
• does anyone take diomox for cystic macular edema and if so do you feel sick when you take it?
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• Who's responding?
• Posted: 2008-01-29 15:10:44 By Darran Z
• I have gotten several responses to CNTF Update to my comments but no comment posted. I would ask that if you are trying to post, try responding to this or try a new thread. Maybe yoru post will come through.
  
  Darran
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• CNTF update
• Posted: 2008-01-29 12:56:14 By Paul S
• So I went for my 3-month visit and was informed of the change in the study.
  
  Originally I was to have the implant removed after 1 year and then have several follow-up visits to make sure things we OK.
  
  Now at one year, I have the option of leaving it in and then I will have 1 final follow-up visit 6 months later and then the study is over, no more visits.
  
  Since the capsule has so far show no negative impacts in studies this change saves Neurotech a lot of money on the explant surgery. Unfortunately, since there is no long-term follow-up we may never ultimately know the long-term benefits.
  
  
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• Iowa Update
• Posted: 2008-01-29 00:58:38 By Stephanie R
• Hello Darran and everyone,
  
  I haven't posted in a little while but wanted to update you on my visit to Dr. Stone a week or so ago. Thank you so much for bringing him to my attention! The whole place, but especially Dr. Stone, was just wonderful.
  
  Anyway, it seems that I am quite the anomaly. I have x-linked cone-rod dystrophy as a manifesting carrier and also the optic neuritis that is associated with multiple sclerosis. I also have MS. He said my optic nerves had been "dinged" by the optic neuritis which causes the episodes of "dimness" like someone has turned out the lights and everything gets blurry after I read for an hour or so. All my other symptoms are associated with the CRD.
  
  I have the distinction of being the only person he has seen with this particular combination of diseases in the same eye! At any rate, I am so grateful to finally have answers and know what is going on after years of stumping every doctor I met.
  
  Thank you so much for letting me know about this man. I think he is probably one of the very few who could have sorted this all out. And I have never seen an eye doctor that said, "I know what is wrong," so that was worth the trip itself. Food in Iowa is good too ....
  
  Steph
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• Anybody in the northern california area.
• Posted: 2008-01-28 18:57:40 By Robert W
• Hey i was wanting to know if anybody lives in the northern california area and wanted to start some kinda support group or something. If so hit me up at bobhowr2005@aol.com. I just got diagnosed with RP last month and im now facing a medical board with the Air Force.
  
  Bob
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• CNTF Question
• Posted: 2008-01-27 14:39:30 By Dan G
• Does anyone know if the company that created the CNTF chip, plans to come out with a new model after all the results are in from the clincal study? I was not sure if this was something they could make adjustments too or not.
  
  Dan
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• CNTF Update??
• Posted: 2008-01-25 20:28:26 By Rick H
• Anyone have any updates on the CNTF study? Any problems or improvements?
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