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• Questions
• Posted: 2007-10-05 16:21:55 By Angela R
• Hi my name is Angela and I am new to the message board. I am from St.Louis and recently read about someone seeing a great doctor. I am going to Dr.Wolfe and I too have an appointment on the 10/16. I have not been diagnosed but I will give some history. My grandfather was diagnosed with RP and so was his brother and his other brother had extremely bad eye sight but never diagnosed. When I was five years old my pediatrician looked in my eye and told my mom I needed to go see Dr. Wolfe (RP specialist?). My mom was checked and told she was a carrier (X-link?). He told my mom to tell me when I was of age to never have any children. I have always had perfect vision and I am married now with an 8 month baby girl. I have been having headaches for months so my husband told me to get my eyes checked. All this information came out because my mom told me not to get worried when they looked in my eye. They dialated my eyes and I was scared to see the doctors reaction (something they had never seen or like they said perhaps the beginning of RP). This is not a topic my family likes to discuss because my mom watched my grandfather go blind. She just told me what this doctor had to say two weeks ago. No one in my family ever researched RP so my mom didn't know what it meant to be a carrier until my husband and I told her. Are there other carriers? And from the information I read I think I may be an X-link carrier? I have so many questions. Are there any that I need to be asking on 10/16? If so I need your help.
  
  My husband is completely worried and if I am a carrier he does not want any more children. I feel blessed to have my daughter and was always open to adoption but this saddens me because I wanted to be pregnant again.
  
  I may be jumping to conclusions but feel totally confused. I apologize but really have no one to talk too.
  
  Please Help Me.
  
  Angela
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• Darran
• Posted: 2007-10-05 12:28:54 By Kimberly C
• Darran:
  You seem very to know a lot about RP. My sister at 46 was diagnosed this week. Does this lead to total blindness eventually? I have researched and found that it's probably very individualized. She is considered to have the mildest form of RP right now but was told she is legally blind and not to drive anymore. Is there anything we need to plan for. She wants us to do nothing at the moment. I'm sure she is trying to process all the imformation to make good decisions. She is going for a 2nd opinion but from what I have research it's a pretty clear diagnosis.She is fearful she has passed the gene to her son.
  Thanks for any info or recommendation you can offer,
  Thanks,
  KRC
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• signs and symptoms?
• Posted: 2007-10-05 07:45:49 By Angela D
• I was diagnosed with RP when I was a very young child. My grandfather and his twin on my fathers side were both born blind.
  I have always had to wear glasses, although in the last few years my eyesight has gotten worse. My eyes will both go blurry and it is hard to see even with my glasses. I wake up sometimes and am not able to see anything for a few minutes. I was wondering if these were signs that the RP is advancing. I have spoken to my eye doctor and all she said was that there was nothing that could be done and that these things were only going to get worse, and that she really didn't know enough about RP to even begin to tell me what I should keep "an eye out for", I am just curious as to what I should watch for...
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• depression
• Posted: 2007-10-04 22:53:24 By karen s
• I am new to the message board, but have found the comments very helpful. I have rp with 5/10% field. I know some of you will say I am feeling sorry for myself and I probably am. However, I no longer drive, my children are grown and living on their own, so I am suffering from the preverbial empty nest syndrome. Since I can't drive I sit here without much enthusiaism for anything. I too resist the cane and hve thought of a dog. Any suggestions for someone on the pity pot?
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• RP
• Posted: 2007-10-04 00:20:55 By Rev. Randy C
• Iam pretty much new at all of this, My son has RP and has had it all his life. He is now in his 20's and his eye site is getting worse about every year to six months. Is there anything out there that I can do to help him ?
  I would love to hear some good news. Thanks for your time.
  
  Randy
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• is that the cure
• Posted: 2007-10-03 10:29:28 By ali k
• hi all am ali am syria am 26 old i have Retinitis Pigmentosa i begane to fell it sence i was 16 , now i have more spots in my eyes i cant see through it but the thing that this spots r not dark only not clear its like u looking through dirty glass so by comparing to other ppl with Retinitis Pigmentosa i think its not the badest one but its make me hit things all the time and fully blind in the dark .
  i read about cur by takeing omega 3 and A + E every day well help to stop the disease and rebiuld the cells
  my question is that truth and if for how long i have to take this pills
  and thank you
  
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• Dr. Appt
• Posted: 2007-10-03 10:08:27 By ali k
• hi Dr. Appt am ali am syria am 26 old i have Retinitis Pigmentosa i begane to fell it sence i was 16 , now i have more spots in my eyes i cant see through it but the thing that this spots r not dark only not clear its like u looking through dirty glass so by comparing to other ppl with Retinitis Pigmentosa i think its not the badest one but its make me hit things all the time and fully blind in the dark .
  i read about cur by takeing omega 3 and A + E every day well help to stop the disease and rebiuld the cells
  my question is that truth and if for how long i have to take this pills
  and thank you
  
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• Suggestions for getting a cane
• Posted: 2007-10-01 15:28:04 By Elizabeth E
• I have RP and I would feel more comfortable walking at night and through the grocery stores with a cane does anyone have any suggestions on what kind to get? I have looked on about 4 different websites but there were so many choices. I would not use it all the time mostly in crowds.
  Thanks,
  Elizabeth
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• Dr. Appt
• Posted: 2007-10-01 13:45:38 By Jennifer K
• My name is Jen and I have had Rp for several years now. Now I am supposed to have this wondeful dr. But when I read these messages board(my first time today) I feel like I know nothing about my own vision or anything. There are several topics and abbrevations that I have never heard of. Is there someone who can maybe help me with a list of questions to talk to the Dr about. I am in the St. Louis area. My appt is on the 16th..I do think I have had a decrease in my vision. I havent drove since 2001. I am ready to face this. I have 2 small girls at home and need help with different areas with housework and etc. I need a tutor for RP..LOL!
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• Dr. Appt
• Posted: 2007-10-01 13:45:31 By Jennifer K
• My name is Jen and I have had Rp for several years now. Now I am supposed to have this wondeful dr. But when I read these messages board(my first time today) I feel like I know nothing about my own vision or anything. There are several topics and abbrevations that I have never heard of. Is there someone who can maybe help me with a list of questions to talk to the Dr about. I am in the St. Louis area. My appt is on the 16th..I do think I have had a decrease in my vision. I havent drove since 2001. I am ready to face this. I have 2 small girls at home and need help with different areas with housework and etc. I need a tutor for RP..LOL!
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• Looking for family with RP in Buffalo area
• Posted: 2007-09-30 16:20:44 By Vicki P
• Hi, My RP is primary, therefore there's a 50% change that my children will have it (don't know yet). My mother had it and my grandmother. Gram was Victorine Blim Rumple. she had at least a niece and nephew that lived in the Buffalo / Williamsville NY area that had it. Gram was born in 1888 in Niagra Falls NY, the youngest of a family of 6. I don't know much, but my mother's name was Edith and I remember Gram's older sister was May Blim and she married Clarence Metz and they had two sons (no RP there). Let me know! Email Address: vparker@umich.edu.
  
  (This RP seems to start in the later years and my grandmother could still see some @ 92 and Mom when she passed away @ 86).
  
  Vicki
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• Cane Practice
• Posted: 2007-09-29 17:02:44 By Jacqueline B
• Well, we just got back today and Amy used the cane the first night like a mad woman! The area she was walking in on the ship was so bright and she was walking so fast with it that I we were afraid she was going to seriously hurt someone. Several people tripped over it due to her speed and the other cruises trying to squueze by! My mother and I asked her to put it away or slow down! I want her to learn to use it and rely on it but not at the expense of tripping people because she is a very fast walker when she wants to be. Any ideas?
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• Research Symposium in Cleveland
• Posted: 2007-09-29 10:00:01 By Dan G
• I received an invite in the mail for a Research Symposium in Cleveland sponsored by the FFB. It sounds interesting. There are a couple of doctors speaking about the current research being done on retinal diseases. Just curious, if anyone has ever been to one of these before and what their thoughts were. Is it worth going?
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• NANO TECHNOLOGY
• Posted: 2007-09-29 02:32:00 By james n
• http://youtube.com/watch?v=5jqQxuVncmc
  
  It's one of our hope.
  
  just pray... :)
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• hi all
• Posted: 2007-09-28 19:24:44 By Mose H
• my doctor told me today that i dont have rp like i expected but i have another retinal desise so and that sound maybe good ore bad i dont know but my conditions i like that i have low central vision its hard to read text and things like that but i have normal side vision
  so i want to ask you here who have a good experience about eye disase anyone know what kind of disas is that?? but he told its retinal defect
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• Retinal specialist in Chicago???
• Posted: 2007-09-27 19:13:36 By Luis M
• 
  Hi Everyone,
  
  Curious to know, can anyone recommend an excellent retinal specialist in Chicago? Also, I have Ushers 2.
  
  I have seen Dr. Gerald Fishman, and would like to explore other options. I suppose what got me to this point is I think Dr. Fishman's practice has grown too large/commercial, currently run by researchers. (In fact, one of his researchers became so aggressive- calling me no less than a dozen times to recruit me for some research. Just to get her to stop calling mee, I told her I was not available via e-mail. Boy! you should have seen quickly she stopped dealing with me, so obvious she wanted me as a lab specimen, not as a person with feelings, etc..). The researcher's behavior definitely swayed my decision (been thinking about it for awhile) to change retinal specialists. In sum, I make it a point to avoid seeing a specialist who relies upon too many researchers to do the work, thus hindering ability to develop a trusting patient-doctor relationship with the point specialist. And yes, I am absolutely petrified of being "venus fly trapped" into becoming a lab rat for researchers, under the pretense of seeing a specialist.
  
  I am strongly considering Boystown in Omaha, Nebraska based upon several interactions with them within the last two years and a friend's experience (she is based out Chicago as well). But before I proceed with Boystown, I wanted to ask anyone on the board if they can recommend anyone else in the Midwest. I understand Dr. Michael Grassi (University of Chicago) is on the cutting edge...anyone have any experience with him? Any suggestions will be greatly appreciated. Also, for faster response and possible discretion, please send an e-mail to nmmontal@uchicago.edu.
  
  Thank you,
  
  Nicole
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• Vitamin A
• Posted: 2007-09-27 17:29:19 By Michael C
• Valarie, I buy my vitamin A on-line at VitaminShoppe.com, for what seems to me a reasonable price.
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• Reading Problems
• Posted: 2007-09-25 12:48:00 By Larry G
• I don't understand why I need such strong reading glasses. I am 57 years old, have RP (less than 20% field of vision) and chonic cystoid macular edema (continuous for the last 3 years). My visual acuity is 20/65 right and 20/80 left. At the time I was diagnosed with CME I noticed that my normal bifocal lenses were not good enough for reading. I have bought reading glasses at 4.00 strength in oder to read or do the computer. Does anyone else have this kind of problem and if so, is there a medical explanation for this as I believe this goes above and beyond the normal need for bifocals. I would appreciate any ideas anybody may have.
  
  Thanks,
  
  Larry
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• Recent CNTF implant patient
• Posted: 2007-09-23 20:45:53 By Andrew S
• Hello I just wanted to update everybody. I was implanted at the U of M on 9-20. Everything went extremely well. My recovery has been easier than expected. My vision should be back to pre surgery acuity soon. I was wondering if anybody else has any positive happenings to report?
  Andrew
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• Treatments available
• Posted: 2007-09-23 19:13:16 By Steve B
• I have researched a few companies that claim to help pt with RP. One was mentioned in the chat room. That was Stem Cell Pharma. Does anyone know of any success or fraud from this company? Another is the Institute of Longevity and Preventive Medicine. E-mail address is www.macularcure.com. The third company is out of California, Advance Cell Technology. The last on is out of India,
  L V Prasad Eye Institute.
  
  Does anyone have any advice or knowledge of these companies? I have a friend that had MI and went overseas to get stem cell from his bone marrow and improved his heart. He went overseas because stem cell is not approved here in the US. He was disperate and knew he wouldn't have long time to live. His injection fraction was only 20% (normal 75%) after the procedure it improved to 40%. I feel I am desperate and can't wait for FFB to find a solution.
  
  
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• Getting to work..
• Posted: 2007-09-21 22:39:57 By tara l
• While I'm here, I figured I would post one more...
  I currently live about 30 minutes from work and still drive. My driving during the day is fine and I still drive at night sometimes. However, if it rains or the traffic is bad, I can't drive at night. I started a new job in January and realized on the first day that unlike my old job, there was a ton of pedestrian traffic in the area and very difficult to manage. I usually work till about 6:30-7 so for most of the year, I'm leaving when it is still light out, but during the winter it is dark and there are too many people around.
  For the longest time, my parents lived near me and wouldn't hesitate to come pick me up. They recently moved and I have very few options in the case of emergency other than leave at 4:00 while its still light outside (not the greatest thing for work). I realize that I need to move. I was looking into towns that were closer, which solves some problems, but not all. There is one town I can move to where mass transportation is fabulous and quite a few co-workers live there, so I have some back up. The thing is, if I take mass trans, then I have to walk to where I would live. Frankly, I'd rather trip over a few sidewalks than worry about hitting someone. But seriously, what do you guys all do?? How do you manage getting to and from work without having to drive or walk at some point?? My vision isn't so bad that I can't walk. I can see cars, just not little stuff like raised sidewalks and sidewalk stands. Ninety percent of the time I'm okay to drive too. I know I have limits and when I can't I won't, but it is getting to darn hard to plan for those emergencies.
  
  
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• Msg for Dudley (or anyone else who does cycling or triathlons)
• Posted: 2007-09-21 22:21:39 By tara l
• Hi,
  
  I'm new to this board. I was doing a search on Google for cycling with RP and one of the messages from Dudley came up about doing triathlons. I'm not sure if he is still on the board, but if not, maybe someone else can help.
  
  I have Ushers II Syndrome and was diagnosed with RP at 19 (I'm 29 now). For the most part it has just been an annoyance. I recently got a new bike and would like to train for a triathlon. My mom, who sometimes talks like I should stop doing pretty much everything except breathing... ok not that bad)... keeps saying "you shouldn't do this, you might get hurt." I am fiercely independent and once someone says "you can't", I say "watch me." I realize though that cycling is a bit difficult with reduced vision and hearing, but I know I'm not the only person out there who wants to do this. Any advice, information, groups to contact, etc?
  
  Thanks,
  Tara
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• answer me plz
• Posted: 2007-09-21 22:14:10 By hamid a
• Hi.I am Hamid 19 From Iran. I suffer with Rp.I want to know that if fasting hurt our eves or not ?
  And If NECESSARY that i eat vitamin A capsules or not ?
  If want to talk And help me plz email on : Hamidtala_1@yahoo.com
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• STEM CELL AND RP
• Posted: 2007-09-20 10:49:40 By Brad H
• CHECK OT THIS SIT AND LET ME KNOW WHAT YOU THINK.
  www.stemcellpharmainc.com. Hope it can help
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• Can anyone help me to give me a detailed info abt RP
• Posted: 2007-09-20 07:01:57 By Nitesh B
• Hi im Nitesh n suffering from rp, i dnt hav ny perfect info abt rp n bcuz of this im nt able to understand wut to do n wut not to.
  
  I hope anyone of you might reply mee
  
  My id nitesh_143@hotmail.com
  
  bye tc n reply soon.
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• GUIDE DOGS
• Posted: 2007-09-19 22:38:09 By Jacqueline B
• Does anyone have a guide dog? My daughter eventually wants to get one and we had some questions.
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• finding a job
• Posted: 2007-09-19 16:06:53 By Ryan B
• I am trying to find a job from which I can work from home. Does anyone know where I might find such a job?
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• Those on disability.
• Posted: 2007-09-19 14:06:35 By Bradley C
• To anyone who's on disability. I know I've asked Darran about house loans and what not. How does the credit companies look at it when you go to buy, let's say a car? I know they'll ask my income and all of that. I'm just curious how my income will be looked at as the co-signer of the car. My wife works and all of that and she has excellent credit but if we do need a co-signer I was just curious how they would look at it since I'm getting disability.
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• Vitamin A debate
• Posted: 2007-09-18 23:24:22 By Christina H
• Why hasn't there been an independent study about the effects of Vit. A on RP? It affects so many people who don't know whether to take it or not. I know my doctor told me both sides of the argument and told me to make the decision for myself. Isn't that what FFB is for? Why don't they fund an independant study? It seems to me that's the whole scientific method anyway. You shouldn't just say someone's results are wrong, you should conduct your own study to prove it using the right controls. What forms of RP is Vit A supposed to help anyway? and where can we find a plain English version of the study?
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• your son
• Posted: 2007-09-17 13:01:23 By Christian D
• I myself have rp and found out at age 10. i am 23 now and have coped fine. i can still go to movies and drive during the day. my best corrected vision is 20/40 and has been for years now. i believe there has been no more progression on my eye disease and i have the most difficulty at night. i think the best thing that you can realize is that it varies from case to case. my brother has it as well and is legally blind. he lost his driving privalages at 16 and is 26 now. he can walk around but has great trouble seeing tvs and computers without being about two inches away from the screen. so i hope this helps and just have faith. prepare for the worst but hope for the best. :) there will be a cure soon and probably before he is 20 so keep strong.
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