Guest guest Posted November 23, 2000 Report Share Posted November 23, 2000 Lu, Yes we are 100 % sure now that both Desi, Matty and I have it. Their symptoms are identical to when mine first started. The bright side is that it was caught 20 years earlier and at least they know how to treat it. I forgot who said that Dr. T' has a patient that has been in remission for 13 years. Was that you Russ? The Dr.s are working on med.'s. with them right now. Hoping to not need to go into steroids and class one autoimmune suppressants. Desi already has to use nasal cort, which is a steroid inhaler, but it is working really well. As for my sister. I've know for a long time. She just refuses help and medical treatment. I traced my Mom's family's medical history,, they all have classic RP symptom's with the exception of the two 1st cousins that have their organs on the wrong side of the bodies. I don't know the medical term for that. Talk about a family that should not me allowed to have kids! I have read a lot here recently that there have found that there is a genetic tendency that runs in families and that they believe that it is triggered by a toxic reaction that sets it off. So it stands to reason that Sis, me and the kids would have it. We all lived in the same area that B's husband was exposed to that chlorium 6 chemical. And Sis and I worked in some of the same research labs out on China Lake. Found a weird thing these past few months but struck home last night. Is the clusters of persons with RP the control group was 84 persons. About 28% of the persons with RP have lived in the same places I have. Too strange. Well I wish I had Glenda's magic wand. But reality and identifying the problem was just as good. Now we can work together to beat this. And know my mind is still spinning. Couldn't even imagine riding today!. Thanks For the prayers. Love Di Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2000 Report Share Posted November 23, 2000 >Found a weird thing these past few months but struck home last night. >Is the clusters of persons with RP the control group was 84 persons. About >28% of the persons with RP have lived in the same places I have. Too >strange. Is there a study with this info? Thanks Lu, yup Lu, Yes we are 100 % sure now that both Desi, Matty and I have it. Their symptoms are identical to when mine first started. The bright side is that it was caught 20 years earlier and at least they know how to treat it. I forgot who said that Dr. T' has a patient that has been in remission for 13 years. Was that you Russ? The Dr.s are working on med.'s. with them right now. Hoping to not need to go into steroids and class one autoimmune suppressants. Desi already has to use nasal cort, which is a steroid inhaler, but it is working really well. As for my sister. I've know for a long time. She just refuses help and medical treatment. I traced my Mom's family's medical history,, they all have classic RP symptom's with the exception of the two 1st cousins that have their organs on the wrong side of the bodies. I don't know the medical term for that. Talk about a family that should not me allowed to have kids! I have read a lot here recently that there have found that there is a genetic tendency that runs in families and that they believe that it is triggered by a toxic reaction that sets it off. So it stands to reason that Sis, me and the kids would have it. We all lived in the same area that B's husband was exposed to that chlorium 6 chemical. And Sis and I worked in some of the same research labs out on China Lake. Found a weird thing these past few months but struck home last night. Is the clusters of persons with RP the control group was 84 persons. About 28% of the persons with RP have lived in the same places I have. Too strange. Well I wish I had Glenda's magic wand. But reality and identifying the problem was just as good. Now we can work together to beat this. And know my mind is still spinning. Couldn't even imagine riding today!. Thanks For the prayers. Love Di DISCLAIMER!! WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2000 Report Share Posted November 23, 2000 Sorry Di, but I'm getting confused. Desiis your son, right? And Matty is or is not your sister? Thanks. CArolyn Lu, yup > Lu, Yes we are 100 % sure now that both Desi, Matty and I have it. Their > symptoms are identical to when mine first started. The bright side is that > it was caught 20 years earlier and at least they know how to treat it. > I forgot who said that Dr. T' has a patient that has been in remission for > 13 years. Was that you Russ? > The Dr.s are working on med.'s. with them right now. Hoping to not need to > go into steroids and class one autoimmune suppressants. Desi already has to > use nasal cort, which is a steroid inhaler, but it is working really well. > > As for my sister. I've know for a long time. She just refuses help and > medical treatment. > I traced my Mom's family's medical history,, they all have classic RP > symptom's with the exception of the two 1st cousins that have their organs > on the wrong side of the bodies. I don't know the medical term for that. > > Talk about a family that should not me allowed to have kids! > > I have read a lot here recently that there have found that there is a > genetic tendency that runs in families and that they believe that it is > triggered by a toxic reaction that sets it off. So it stands to reason that > Sis, me and the kids would have it. We all lived in the same area that > B's husband was exposed to that chlorium 6 chemical. > And Sis and I worked in some of the same research labs out on China Lake. > > Found a weird thing these past few months but struck home last night. > Is the clusters of persons with RP the control group was 84 persons. About > 28% of the persons with RP have lived in the same places I have. Too > strange. > > Well I wish I had Glenda's magic wand. But reality and identifying the > problem was just as good. Now we can work together to beat this. > And know my mind is still spinning. Couldn't even imagine riding today!. > > Thanks For the prayers. > > Love > Di > > > > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2000 Report Share Posted November 24, 2000 Dianna, did it take 20 years for them to diagnose your RP? I guess my paltry 3-4 years may not have been so bad after all......LOL -- gotta laugh Carolyn Lu, yup > Lu, Yes we are 100 % sure now that both Desi, Matty and I have it. Their > symptoms are identical to when mine first started. The bright side is that > it was caught 20 years earlier and at least they know how to treat it. > I forgot who said that Dr. T' has a patient that has been in remission for > 13 years. Was that you Russ? > The Dr.s are working on med.'s. with them right now. Hoping to not need to > go into steroids and class one autoimmune suppressants. Desi already has to > use nasal cort, which is a steroid inhaler, but it is working really well. > > As for my sister. I've know for a long time. She just refuses help and > medical treatment. > I traced my Mom's family's medical history,, they all have classic RP > symptom's with the exception of the two 1st cousins that have their organs > on the wrong side of the bodies. I don't know the medical term for that. > > Talk about a family that should not me allowed to have kids! > > I have read a lot here recently that there have found that there is a > genetic tendency that runs in families and that they believe that it is > triggered by a toxic reaction that sets it off. So it stands to reason that > Sis, me and the kids would have it. We all lived in the same area that > B's husband was exposed to that chlorium 6 chemical. > And Sis and I worked in some of the same research labs out on China Lake. > > Found a weird thing these past few months but struck home last night. > Is the clusters of persons with RP the control group was 84 persons. About > 28% of the persons with RP have lived in the same places I have. Too > strange. > > Well I wish I had Glenda's magic wand. But reality and identifying the > problem was just as good. Now we can work together to beat this. > And know my mind is still spinning. Couldn't even imagine riding today!. > > Thanks For the prayers. > > Love > Di > > > > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > Quote Link to comment Share on other sites More sharing options...
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