Guest guest Posted April 14, 2006 Report Share Posted April 14, 2006 Does anyone have a diagnosis of retinitis pigmentosa? What degree of progression have you expereinced? Where the visual changes slow or rapidly progressive? Do you know of any treatment that might slow the progression (other than the mito cocktail)? lies has had several (3) small areas of pigment for several years, but over the past three months three physicians (including Dr. Cohen) have commented on the changes in her retinal exam. I suspect the changes are significant because he asked for a repeat neuro-ophthamology evaluation and the other physicians asked when her next eye appointment was scheduled. Honestly, it isn't because of insurance changes/issues. But, I beginning to doubt that decision, and wonder if we really need to pay out of pocket to have her evaluated sooner rather than later. If there is absolutely nothing that can be done to slow or reverse the process, I don't know that it truly matters. lies even made the comment that she's in no hurry to be told she is going blind and there is nothing that can be done. On her last exam, her left eye was unaffected. I know that could change but I feel like there is still hope at least some vision may be spared. What has your expereince been? At what point should I approach ECAD about adding guide dog type skills to Stitches " abilities " . I knwo Stitch won't mind, but timing could be an issue. Joanne Kocourek (mom to , lies, and ) visit us at: http://www.caringbridge.org/il/annakris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2006 Report Share Posted April 14, 2006 Hi Joanne - I have what are described as " retinal pigmentary changes " which I don't think is the same thing as " retinitis pigmentosa " , not sure if its the precursor though. I am 57 and looking back at eye exams know that I had it at least 15 yrs ago also and probably well before. I also have " deep cupping " whatever that is. My eyesight is fine for my age. Only eye problem - CPEO ptosis unrelated. My impression is that it progresses slowly. pamela (melas, initial onset before age 20) Retinitis pigmentosa Does anyone have a diagnosis of retinitis pigmentosa? What degree of progression have you expereinced? Where the visual changes slow or rapidly progressive? Do you know of any treatment that might slow the progression (other than the mito cocktail)? lies has had several (3) small areas of pigment for several years, but over the past three months three physicians (including Dr. Cohen) have commented on the changes in her retinal exam. I suspect the changes are significant because he asked for a repeat neuro-ophthamology evaluation and the other physicians asked when her next eye appointment was scheduled. Honestly, it isn't because of insurance changes/issues. But, I beginning to doubt that decision, and wonder if we really need to pay out of pocket to have her evaluated sooner rather than later. If there is absolutely nothing that can be done to slow or reverse the process, I don't know that it truly matters. lies even made the comment that she's in no hurry to be told she is going blind and there is nothing that can be done. On her last exam, her left eye was unaffected. I know that could change but I feel like there is still hope at least some vision may be spared. What has your expereince been? At what point should I approach ECAD about adding guide dog type skills to Stitches " abilities " . I knwo Stitch won't mind, but timing could be an issue. Joanne Kocourek (mom to , lies, and ) visit us at: http://www.caringbridge.org/il/annakris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2006 Report Share Posted April 14, 2006 I also have retinal hyperpigmentation but it's not retinitis pigmentosa. It's definitely abnormal but not progressive at this point. If lies is having more trouble with night vision, I would definitely be sure she's seen. How long will you not have insurance? If it's not too much longer, you could probably wait it out as long as she doesn't get symptomatic at night. I think that's the first sign of progression with retinitis pigmentosa. Have you asked her doctors if they think its okay to wait? I also had an ERG to assess the degree of the retinal issues. If she hasn't had one of those done yet that's probably the next step. I have heard of retinitis pigmentosa progressing within months with one child. This child progressed very rapidly in other areas as well, so it may be dependent on each person. Tell her I said hi! Malisa In a message dated 4/14/2006 5:42:30 P.M. Eastern Standard Time, pamelama33@... writes: Hi Joanne - I have what are described as " retinal pigmentary changes " which I don't think is the same thing as " retinitis pigmentosa " , not sure if its the precursor though. I am 57 and looking back at eye exams know that I had it at least 15 yrs ago also and probably well before. I also have " deep cupping " whatever that is. My eyesight is fine for my age. Only eye problem - CPEO ptosis unrelated. My impression is that it progresses slowly. pamela (melas, initial onset before age 20) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2006 Report Share Posted April 14, 2006 Hi Malisa, Those are good questions. For lies, either way, it has been very rapidly progressive lately. Originally she had one area of abnormal pigment, then 6-12 months ago, three. Now there is clearly a marked increase as three different physicians have all commented on seeing a marked abnormality over the past 2-6 weeks (two physicians that had not seen her before). lies had had some issues with night vision for several months. The odd thing is that only her right eye is affected. My husband's company closed last fall. So far ZERO job prospects so I have no idea when other insurance will be available. I'm hoping it's soon as the bills are adding up quickly (including mine). Both girls have Medicaid but several of our providers do not accept it (and some thet do refuse to support a mito diagnosis even with positive biopsies so I refuse to take the girls to them). We are traveling to ECAD in NY in two weeks. I'm beginning to wonder if I need to ask them about how to add guide dog type skills to Stitches knowledge base. He is still young and eagerly learns new skills. My gut feeling is if the skill will ultimately be needed it would be far easier for lies to work with him while her visiion has some distortion (now) very significant distortion at some point in the future. They've had confirmed progression in other organ systems over the past 6-12 months so this is really making me ill at ease. I know, it;s a mom thing Malilibear@... wrote: I also have retinal hyperpigmentation but it's not retinitis pigmentosa. It's definitely abnormal but not progressive at this point. If lies is having more trouble with night vision, I would definitely be sure she's seen. How long will you not have insurance? If it's not too much longer, you could probably wait it out as long as she doesn't get symptomatic at night. I think that's the first sign of progression with retinitis pigmentosa. Have you asked her doctors if they think its okay to wait? I also had an ERG to assess the degree of the retinal issues. If she hasn't had one of those done yet that's probably the next step. I have heard of retinitis pigmentosa progressing within months with one child. This child progressed very rapidly in other areas as well, so it may be dependent on each person. Tell her I said hi! Malisa In a message dated 4/14/2006 5:42:30 P.M. Eastern Standard Time, pamelama33@... writes: Hi Joanne - I have what are described as " retinal pigmentary changes " which I don't think is the same thing as " retinitis pigmentosa " , not sure if its the precursor though. I am 57 and looking back at eye exams know that I had it at least 15 yrs ago also and probably well before. I also have " deep cupping " whatever that is. My eyesight is fine for my age. Only eye problem - CPEO ptosis unrelated. My impression is that it progresses slowly. pamela (melas, initial onset before age 20) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2006 Report Share Posted April 14, 2006 Joanne My personal opinion is that having Stitches trained as a guide dog will do no harm, but it might be what lies needs. I think all of us seeing folks could use the sensitivity of a guide dog to keep us out of trouble sometimes. laurie > Hi Malisa, > > Those are good questions. For lies, either way, it has been very > rapidly progressive lately. Originally she had one area of abnormal > pigment, then 6-12 months ago, three. Now there is clearly a marked > increase as three different physicians have all commented on seeing a marked > abnormality over the past 2-6 weeks (two physicians that had not seen her > before). lies had had some issues with night vision for several months. > The odd thing is that only her right eye is affected. My husband's company > closed last fall. So far ZERO job prospects so I have no idea when other > insurance will be available. I'm hoping it's soon as the bills are adding > up quickly (including mine). Both girls have Medicaid but several of our > providers do not accept it (and some thet do refuse to support a mito > diagnosis even with positive biopsies so I refuse to take the girls to > them). > > We are traveling to ECAD in NY in two weeks. I'm beginning to wonder if I > need to ask them about how to add guide dog type skills to Stitches > knowledge base. He is still young and eagerly learns new skills. My gut > feeling is if the skill will ultimately be needed it would be far easier for > lies to work with him while her visiion has some distortion (now) very > significant distortion at some point in the future. They've had confirmed > progression in other organ systems over the past 6-12 months so this is > really making me ill at ease. I know, it;s a mom thing > > > Malilibear@... wrote: > I also have retinal hyperpigmentation but it's not retinitis pigmentosa. > It's definitely abnormal but not progressive at this point. If lies is > having more trouble with night vision, I would definitely be sure she's > seen. How > long will you not have insurance? If it's not too much longer, you could > probably wait it out as long as she doesn't get symptomatic at night. I > think > that's the first sign of progression with retinitis pigmentosa. Have you > asked > her doctors if they think its okay to wait? I also had an ERG to assess the > > degree of the retinal issues. If she hasn't had one of those done yet > that's > probably the next step. > > I have heard of retinitis pigmentosa progressing within months with one > child. This child progressed very rapidly in other areas as well, so it may > be > dependent on each person. > > Tell her I said hi! > Malisa > > In a message dated 4/14/2006 5:42:30 P.M. Eastern Standard Time, > pamelama33@... writes: > > Hi Joanne - I have what are described as " retinal pigmentary changes " > which > I don't think is the same thing as " retinitis pigmentosa " , not sure if its > the precursor though. I am 57 and looking back at eye exams know that I > had > it at least 15 yrs ago also and probably well before. I also have " deep > cupping " whatever that is. My eyesight is fine for my age. Only eye > problem - > CPEO ptosis unrelated. My impression is that it progresses slowly. pamela > (melas, initial onset before age 20) > > > > > > Quote Link to comment Share on other sites More sharing options...
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