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• Stem Cells
• Posted: 2008-03-06 19:35:17 By Luis G
• Hi everybody!
  
  I just want to share the following:
  
  http://www.advancedcell.com/press-release/advanced-cell-technology-announces-completion-of-pre-ind-meeting-with-the-fda-for-rpe-therapy-for-the-treatment-of-retinal-degenerative-disease
  
  What do you think?
  
  Luis G.
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• New Findings Chat on 3/6
• Posted: 2008-03-06 18:28:33 By Jeanette P
• Did anyone participate in the "New RP Findings" chat from today? I tried to join but some setting on my laptop was not allowing the chat software to work so I gave up. Chat is still going on for another 30 minutes but there is no phone number to call for Tech Support so guess I'll just read the transscript. I did have a few questions to ask. Oh well. Does anyone have any suggestions for how I can maybe get the chat box is appear next time? It was there but nothing was in it. REALLY and I could have seen it if there was :-) My central vision is still very good. Thanks for any suggestions! Jeanette
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• diamox and cme
• Posted: 2008-03-06 14:05:48 By Nikki s
• wow did i open a whole new can , ok so a while back i posted that i was being treated for my cme , i tried some drops they did not work i went and did the steroid injections and they worked real good at first now my left eye is the worst its ever been before i started seeing this specialist!!! he said the pressure wont come down so he cant inject my left eye and so now there is nothing else he can do for me except try the diamox..oh and now he says within the month i now have a cataract in my left eye soooooo i went to fill my diamox rx 500mg and it was 200 dollars!!! oh goodness so i called and asked for the generic which is 250mg but waaaay cheaper ..the 30count is like 14 bucks..oh good ness i just knew i shoulda never got the shots!!! now i am worse off than i was...and will definately get secong opinion on the cataract..cuz wow that formed quick..
  anyonw else have to pay that much for the diamox??? i sure hope this works its my last resort i guess other than that i live again with the cme and i am right back to where i started thats why i hate the specialists!!!! GRRRR
  sorry had to vent
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• I will eventually have to have laser surgery.
• Posted: 2008-03-05 00:26:14 By Patrick C
• I went to the eye doctor last week so I could get some contacts ordered. She told me that I'm developing cataracts on both eyes and she wants to see me again in 6 months to check up on them.
  
  I have a question though. I asked her this, but she wouldn't give me a straight answer to my question. I will talk to her about it more when I see her.
  
  Most or all of you know that when you wear contacts, it takes away your near sighted vision. When you have laser surgey, they put a prescription lens in your eyes. I was wondering if you could get a neutral lens (like a natural lens instead of a prescription lens) and still wear contacts, so I could have the option of being able to see up close or not. I already have enough trouble reading as it is. I don't want anymore.
  
  Also, many people are working on cures for RP, and I'm very hopeful that one will come out in the not so distant future. If you have a prescription lens put in your eyes, could they take it out and put a non-prescription lens in your eyes so you could recieve the cure?
  
  Any insight on this would be appreciated. Thank you.
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• Yep, Im the CNTF rulebreaker...
• Posted: 2008-03-04 22:12:45 By heather p
• Hey everyone...It has been awhile since I have posted anything-the last 6 months have just flown by. I have just returned from a month long trip to Europe (where even with bumpy cobblestone streets and tons of stairs I didnt trip once! YAY) and am 5 months pregnant. Neurotech has been womderful about letting me keep my implant. As many of you know, one of the rules for the study is to not become pregnant or breast feed while in the study. THey said it was fine and that I might just need to undergo additional testing but overall weren't too concerned. I was so relieved!!!
  
  The implant itself is fine. Haven't noticed any huge change but like I said, made it traveling around and did pretty well considering. :)
  
  Hope all is well with you and I'll try to pop in more often. Cheers!
  
  
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• Vitamin A Palmitate?
• Posted: 2008-03-02 19:57:48 By Vicki T
• Hi everyone. Are there any "vitamin experts" out there? I want to know what the difference is between vitamin A Palmitate and the other vit. A from fish oil or other ingredients. I read an article many years ago on the benefits of taking vit. A for people with RP but it said only the type derived from Palmitate was effective. Has anyone else heard that? If so, why is that? I used to be able to buy that kind at the drug store but now I can only find the fish oil type. Guess I'll have to shop online to get it now? I'm up for trying anything if it helps slow down this disease. I'd appreciate any replies on this subject. Thanks!
  Vicki T
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• Anyone who needs assistance
• Posted: 2008-03-02 18:09:14 By Elizabeth G
• Hello my name is Elizabeth and I a form of RP and have recently started my own business. Through this business I am helping those like myself and any others with any other form of disaliities. It encompasses Advocacy, advice, assisted learning and technology, and much more. I am currently in the processs of creating a website.
  
  If anyone has any feedback please email me. If anyone needs any services please email me.
  
  My information is - flamingoeyessee@aol.com or phone number is 203-912-0046.
  
  To take and always keep smiling.
  
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• Any Updates on the CNTF Clinical Trial??
• Posted: 2008-03-02 17:59:34 By Rick H
• Hello,
  
  Anyone have any updates, good or bad, on the CNTF implant clinical trial? I am going for my 6 months check up next week. I really haven't noticed any changes. Thanks,
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• RP homeopathy
• Posted: 2008-03-01 21:26:48 By Jorge P
• Do you have any experience with homeopathy to the RP treatment?
  What products do you use? What quantity?
  
  Eduardo
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• RP
• Posted: 2008-03-01 20:42:03 By ann h
• My mother experiences what she calls "rain" falling down in front of her eyes. Does anyone else experience that and do you know the cause of this?
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• Do RPers can do fitness?
• Posted: 2008-03-01 11:05:31 By Anna M
• Hi! I'm looking for advice. From one source I heard that intensive physical activity is detrimental for RP, but few doctors said that it's not true. I have RP and astigmatism. I want to start regular fitness exercises. What do you think about it? Thanks in advance :-)
  
  Anna
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• retinitist pigmentosa
• Posted: 2008-03-01 04:50:14 By RAJENDRA V
• Dear Doctors,
  My wife suffers from the above disease(as doctors told)since 20. Gradually she lost her sight and this time she can see only colours(but not easily)from both cores of her eyes. Means, she can feel the movements done at her right side or left side, she can't see any object in front of her. Please advise me what to do? I had consulted doctors at All India Institute of Medical Sciences,New Delhi and Sankara Netralaya,Chennai and many other eye specialists in India.
  -Rajendra Kumar Varma
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• Don't be a DUMB VOTER
• Posted: 2008-02-29 10:57:38 By andrew b
• I've seen a lot of posts where people write about one politician's views on stem cells and espouse that to be a reason to vote for said politician. While a position on stem cells is a good reason to influence a vote, if it's the only reason you vote, then YOU ARE A DUMB VOTER.
  
  I'm not here to say anyone is right or wrong (unless you're a single issue voter), just that you need to weigh risk rewards of a wide variety of positions and come to an educated conclusion about who to vote for. I have a thought and know the position of Huckabee, Obama, Clinton, and McCain on all of these issues. You should too.
  
  Good issues to consider.
  How soon leave Iraq?
  Leave soon, save trillions, but Iraq COULD (maybe not) become another religious state w/ anti-american sentiments with no one to regulate shiia v sunni killings.
  
  Universal Insurance?
  Can the government do a better job insuring everyone then a coordinated plan of regulating/mandating private companies to do it.
  
  Stem Cells?
  Should the government give grants to research around embryonic stem cells?
  
  Environment?
  Do we tax oil more, tax alternative fuel less, what is plan for energy independence (nuclear, wind, solar, etc)?
  
  Illegal Immigration?
  Do we give Amnesty to illegals? Do we make it easier to enter US legally? Do we deport? Do we fine employers of illegals?
  
  Abortion?
  Not really raised as an issue in debates, but as some candidate have a PRO-ABORTION (more than pro-choice) [look at voting records - one candidate voted to allow 14 yr olds to abort w/ no parental involvement]
  
  Education?
  Do you like no child left behind? Should we scrap it? Should we further it?
  
  Economy?
  Should we raise taxes? Should we limit earmarks? Should we penalize companies who hire overseas? What would happen if we penalize companies overseas? Should we bail out homeowners who over-bought?
  
  There are tons of other issues, but these are the big ones I think we should all consider. Read up, be educated, and come to a conclusion.
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• Race to Cure Blindness - Foundation Fighting Blindness
• Posted: 2008-02-29 09:21:52 By Kristine A
• Are you a marathon runner or competitive racer? You can use your racing effort to raise money for the Foundation Fighting Blindness through our Race to Cure Blindness program! To learn more visit www.RaceToCureBlindness.org.
  
  
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• Race to Cure Blindness - Foundation Fighting Blindness
• Posted: 2008-02-29 09:21:47 By Kristine A
• Are you a marathon runner or competitive racer? You can use your racing effort to raise money for the Foundation Fighting Blindness through our Race to Cure Blindness program! To learn more visit www.RaceToCureBlindness.org.
  
  
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• ERM
• Posted: 2008-02-28 20:28:49 By debbie t
• My daughter has RP, today she went to the ophtomotrist and was told she has ERM. Is there any conneciton between the RP and the ERM . Her appointment with the ophtamologist is not until the 7th of next month, does any one have any info about ERM?
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• Alphagan (brimonidine)
• Posted: 2008-02-28 16:15:06 By Michael F
• Hi everyone,
  There is a recent report of a small pilot clincal trial investigating the use of Alphagan (brimonidine) as a neuroprotective agent for RP. The results are modestly encouraging, but await further testing. I noticed that several years ago, someone on this message board had stated that their husband was given Alphagen by their doctor and was wondering if anyone else had tried it for RP?
  
  Here is the information for those science-types:
  Merin S, et al. J of Ocular Pharm and Ther, Vol 24(1), 2008
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• BIONIC VISION
• Posted: 2008-02-27 21:03:59 By james n
• http://youtube.com/watch?v=MhdG9D_ARWY
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• RP Docs in NY area
• Posted: 2008-02-27 13:26:19 By Michael F
• Hi everyone,
  I was diagnosed with CME secondary to RP over a year ago and have seen no improvement in my vision with Diamox (the cysts disappeared, then quickly came back). My long-time RP doctor (over 12 years) is on the conservative side (which I like), but I am thinking of getting a second opinion since the Diamox seems not to be working. Can anyone recommed an RP doctor they are happy with in the NYC area. Thanks for your help.
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• Abreviations ???
• Posted: 2008-02-26 13:42:43 By Vicki T
• I have been reading a lot of past posts on here and I'm not sure what all the abbreviations used on here actually stand for. (ERG, etc.) Would someone please help me out here? I realize it makes typing your messages quicker but some us may not have a clue what you're referring to. I'm sure, if you are reading this, Daran Z, you could give us a short list which could enlighten many of us readers. Your knowledge of "RP" has been like a fountain of information for me. Thank you very much!
  Vicki T
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• Would Valium or Klonopin affect RP?
• Posted: 2008-02-26 04:21:05 By Patrick C
• I may have to get on one of these drugs to sleep disorder (which I won't get into). Does anybody know if either of those could affect my RP?
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• hello...
• Posted: 2008-02-26 02:47:15 By shiela m
• hi to all of you...i just find that i had RP only this month..i also have hyper mayopia and astigmatism.. im only 21 years old..im here in the philippines..my doctor before said that i have only high mayopia and astigmatism, he didnt say that i have RP, so all those years i only knew that i ave have mayopia and astigmatism til i went to manila for check up to another doctor because we have plans of going to operation but im shock to discover that i have RP..my father also have the same illness, infact hes blind now because he underwent to an operation. i didnt know that my father has RP because we're not communicating, he's with he's own family and among he's children im the only one who has the same illness..
  my first symptom is night blindness...i didt see well at night or whenever im in the sark...
  this is the first time that i do search for this RP because according to my doctor there is no treatment yet, so i'm kinda hopeless at first but im now in the process of acceptance..my doctor also said that i'm not going to be blind, but my vision becomes poorer and poorer everyday,,he gave me medicines and vitamins to be taken everyday but they are quite expensive, you know we're not rich to buy all those medicines...i dont want to be pessimistic regarding this and im still hoping, besides im still young..i have lots of dreams, i want to achieve them but its hard because i cant see well, infact i always hit any object or person in front or beside me... its very hard..very very hard..
  i just hope and pray that i will not be blind and someday there will be a proper medication on RP...thanks..god bless us all...
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• eye hemorrhagging
• Posted: 2008-02-23 11:26:11 By Patricia B
• Hi,
  I have RP and during a routine eye examine the doctor notices that there was hemorrhaging on the ocular nerve in one eye. They have ruled out any cause and have no reason for it. has anyone ever had a similar experience and if so what caused it and is there anything to do about it? Thanks
  Pat B
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• cme
• Posted: 2008-02-23 08:38:43 By nancy j
• Hi: I just found this room. I am a 65-year old Psychologist with a diagnosis of cystoid macular edema responding to the person with the question about the dye test for cme. It is nothing to worry about. This is called the Flurochein. Not sure about the spelling. They inject a dye into your arm, then take pictures of your eye so they can see the vascular issues, etc., in your macula. It is painless and the only annoying thing is the light from the camera when they take the pictures. Hope this helps.
  Can anyone offer any information about CME? I have been treated for a year and a half. Started with drops, then injections into my eyelid (about 7) and when that didn't work, an injection of Kenalog into my eye (which caused a reaction of haze which lasted about a week). After that doc was reluctant to inject Kenalog again, so tried Avastin, which did not help. I am now on steroids (UGH!) and just started on Sulfasalazine (now seeing a rheumatologist as well). Please advise. I am more than a little depressed about this since I've been a healthy person all my life, and this has seriously hampered my life.
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• cme
• Posted: 2008-02-23 08:38:39 By nancy j
• Hi: I just found this room. I am a 65-year old Psychologist with a diagnosis of cystoid macular edema responding to the person with the question about the dye test for cme. It is nothing to worry about. This is called the Flurochein. Not sure about the spelling. They inject a dye into your arm, then take pictures of your eye so they can see the vascular issues, etc., in your macula. It is painless and the only annoying thing is the light from the camera when they take the pictures. Hope this helps.
  Can anyone offer any information about CME? I have been treated for a year and a half. Started with drops, then injections into my eyelid (about 7) and when that didn't work, an injection of Kenalog into my eye (which caused a reaction of haze which lasted about a week). After that doc was reluctant to inject Kenalog again, so tried Avastin, which did not help. I am now on steroids (UGH!) and just started on Sulfasalazine (now seeing a rheumatologist as well). Please advise. I am more than a little depressed about this since I've been a healthy person all my life, and this has seriously hampered my life.
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• felal cell transplant
• Posted: 2008-02-22 00:59:41 By doris p
• What is the latest for fetal cell transplants to treat RP? Is there a study using human subjects currently going on? Thanks for your help.
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• Cataracts and advanced RP
• Posted: 2008-02-22 00:53:24 By doris p
• I am 57 years old and I was diagnosed with RP at 18 years old. I have no central vision, some pockets of peritheral vision. My doctor is recomending I undergo cataract surgury.
  
  Is there anyone out there like me that has already had catarcts removed? Was there any improvement in your vision? Were there any complications after the surgury? Please describe your vision before and after the surgury. Thanks for your response.
  
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• i have a 9 year old girl
• Posted: 2008-02-21 19:47:31 By Diane B
• hello my name is Diane and i would like to talk to other parents who are going through the samething as i am
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• i have a 9 year old girl
• Posted: 2008-02-21 19:47:26 By Diane B
• hello my name is Diane and i would like to talk to other parents who are going through the samething as i am
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• Flecks of Pigment
• Posted: 2008-02-20 19:13:01 By Michelle W
• Our daughter (dd10) saw the retina specialist today. I thought we were home free - that her night blindness was nothing - until the very end of the exam. The retina specialist said he saw 'flecks of pigment' in dd10's peripheral retina. He sent her on for a VF test and an ERG.
  
  So is this 'flecks of pigment' in the peripheral retina consistent with RP? (As usual, I thought of a ton of questions after we'd already left).
  
  Is RP a wait and see game? We have no one else in our family with RP and so have no idea what to expect - if it does turn out to be RP. My sister has night blindness but she was told that it was because of her end stage Crohn's and a result of growths she has behind her eye.
  
  What's involved in an ERG? From what I understand, its a 2 hour or so test. I gather its not very pleasant.
  
  Any and all information very much appareciated.
  
  Thanks.
  
  Michelle
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