Guest guest Posted August 25, 2002 Report Share Posted August 25, 2002 Hi Amy My name is Dawn. I can fully sympathize with your pain in the knees. I have had that problem too. My PCP sent me for a nucaler Bone scan and the fellow doing the scan couldn't believe i was still up and walking around. He said my left knee looked really bad, no cartiledge left there. But I still work and get around fine, its just that some days are worse than others. So hang in there it will get better once you get yours meds to work properly dawn RCColloran@... wrote: In a message dated 8/25/02 11:23:27 AM Pacific Daylight Time, Rlr1999 writes:<< << Subj:rp Date:8/22/2002 2:04:11 PM Pacific Daylight TimeFrom:amyinezjohnson@...To:RLR1999@...Sent from the Internet I am diagnosed as having RP. My question is..I have been having pain behind my knees. It feels like what I would call the fascia is painful and the area is the total area behind each knee. Is this possibly a symptom of RP? First pain episode lasted 2 months. Just returned a couple of weeks ago.Thank you,Amy>>Here is a letter that was sent to Roy. Can anyone help Amy? Do any of you have this problem? Thanks in advance for any help you can give her. I have no problems with my knees, so I don't know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2005 Report Share Posted November 12, 2005 Hi Amy, I'm Dakoda's mom .. he had both eyes effected and at 1yr he had muscles clipped and tightened and the other eye was done at 18mos. We have noticed that at 5 1/2 his right eye does seem to wander , not bad but us obvious when he is tired. The surgery helped alot. Jodi wrote:Hi Amy. Sorry I am just now getting back to you on this topic, but I haven't had much time to read the list and I have just been skimming recent posts. But, When I read your post about your lazy eye, I had to respond. My son, , who is 3 1/2 (almost), has what is called a Ptosis (I think that is how it is spelled). His left eye lid is very droopy and it seems to have gotten worse, or more noticeable over time. In earlier pictures, you couldn't see it, but in recent pictures it is pretty bad. I will try to post one under 's photo album and you can see waht I am talking about. Since it has gotten worse, is starting to not use that eye as much because the eye lid covers so much of his eye. Or, he will tilt his head just so so that he can see better. We have been advised to patch his eye four hours a day to see if it helps. But, since his eye lid muscle is so weak in that eye, or only resort at this point is surgery to have it lifted. It will cause a worse astigmatism if we don't take care of it and increasingly worse eye sight. So, that is coming in 's near future, unfortunately. But, I think that it does have something to do with RSS as far as muscles being weak. That muscle just didn't fully develop I guess and hence the lag. So, poor muscle tone stricks again. But, it is weird that it happens in the eye lid itself. But, I know of a few others with RSS kids that are epxeriencing similar problems in their eyes. Cardinale also has a little boy that has the same thing as . Anyway, I hope this helps you out with some sort of answers. Nothing is written on it for RSS, but that is what the doctor and I have concluded and attributed it to. Poor muscle tone as a result of RSS. Take care, Jodi R. > > Hi, > > I told you all about the problems with my hand, remeber? I've got my > medication today; they are very little pills called Magnesium > Phophoricum. I'm supposed to take two every day, before I eat > breakfast. > > > I also wonder... when I was a little girl, a specialist operated on > my eye. Because when I was tired, my left eye kind a hung down in > the corner (has to do with weak muscels I guess). When I think about > it, it seems clear to me because the muscles aren't that strong > because of RSS. But then I realised; in my right hand the muscles > aren't that strong, so the right side should be weak. But my left > eye wasn't that strong... I just keep puzzeling. > > Also, on the side I couldn't find a lazy eye with the symptomes. I > think it's very strange because it obviously should have to do with > RSS don't you think? Right? Does anyone recognize a lazy eye? I > don't know what it is about RSS but I just keep puzzeling and > figuring things out about it... Not that I mind because it is a part > of me! > > Greets, > Amy > Quote Link to comment Share on other sites More sharing options...
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