Guest guest Posted September 2, 2001 Report Share Posted September 2, 2001 Welcome Josh, Glad you are here but not glad to know you have so many medical problems I hope you can find some help and support here. There is so much to learn about pls. I wish you the best. My prayers are with you Your friend Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2001 Report Share Posted September 2, 2001 Sue-Ellen-- I'll join the bandwagon--I have flashes sometimes in my left peripheral vision and sometimes some shifting. I also have a lot of " floaters " , too. My Opth. said don't worry about the floaters but I haven't seen him to ask about the flashes. I'm glad I'm not the only one! Let know what your Opth. says, please. Regards, Ed ames Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2001 Report Share Posted September 2, 2001 Josh, First, welcome to PLS-FRIENDS. Second: Wow! You certainly have more than your share of problems! This site can be very helpful. Just stay tuned and keep your information coming. Mike Gray Logansport IN. josh.gavzy@... wrote: Hi, My name is Josh and I'm NEW to the sight and to my resent DX of PLS. I have been reading through the archives and it feels good to know I'm not alone in my missary. Sorry, back to your question. As I was reading your letter I was saying to myself, I knew the Dr's were wrong. I have the exact same symptoms you discribed. I mean the exact same. I told my Dr. and she said that People with PLS do not have any eye trouble. I have been trying to find information on this and have not been able to yet. Someone who answered your question earlier said it might be age. Well I'm here to tell you it is not. I am only 38 yrs old this Wednessday, Sept. 5th. I unfortunately have more than just PLS. I have Psoriatic Arthritis in every joint scince the age of 4. I have Degenerative Disk Disease in my lower back, Gout and I have Fibromyalgia. So I thought my symptoms could be coming from any one of me issues, but when you discribed what I have been going through so perfectly I knew that it had to be the PLS. I look forward to reading what your Dr. says. Gavzy josh.gavzy@... > Hi Everybody, > There has been some discussion lately and some people had said they have > problems or changes in their eyes/vision which may be caused by PLS. > I have a question today. I know there was reference to something called > "pale optic disc". How was that found? Does a regular opththamologist > check for that? Do you have any vision changes? I am having incidences of > blurring vision, usually in just one eye at a time, that seems to come on > when I am more tired. Also, I can see small shiftings in what I see on the > edges of my field of vision. I'm not even sure how to explain that, but > again it seems to happen more in the evening. All of these seem to come and > go with some times being worse than others. Does anyone have anything > similar? I also have tiny spasms in my face at the sides of my eyes > sometimes? It's like the little twitches everybody gets sometimes around > your eyes sometimes, but seems to last longer and feels different. > I'd appreciate anyone's comments, I have an appointment with my > opththamologist next Wed. and would like to tell him if anyone has similar > events. > Regards, > Sue Ellen Ledford Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2001 Report Share Posted September 2, 2001 Hi Josh, Welcome to our group. Sometimes the Dr's get too hung up in what is supposed to be or not supposed to be symptoms of a disease, and frankly, so do we. It seems to me that we can have a whole host of wierd symptoms that could be caused by PLS (or maybe by something else) but until we get a good study, 200 people worth, how can anyone really know what is PLS and what isn't. The prior studies that have been done on PLS were not with very large groups and did not all have the same criteria for a PLS dx. We also shouldn't have bladder problems but a lot of us do. Same with fasciculations. If you look at ALS and try to decide what symptoms are related to it, you get a whole bunch of stuff, some things more common than others. Parkinson's is the same way and so is MS. If you read the book " Saving Millie " , you'll be amazed at how different Millie's Parkinson's disease is from what you had thought of as Parkinson's. It just means that there are a lot of questions out there to be answered. And there won't be any answers until we get a decent research study. J --- josh.gavzy@... wrote: > Hi, > My name is Josh and I'm NEW to the sight and to my > resent DX of PLS. > I have been reading through the archives and it > feels good to know > I'm > not alone in my missary. Sorry, back to your > question. As I was > reading your letter I was saying to myself, I knew > the Dr's were > wrong. I have the exact same symptoms you discribed. > I mean the exact > same. I told my Dr. and she said that People with > PLS do not have any > eye trouble. I have been trying to find information > on this and have > not been able to yet. Someone who answered your > question earlier said > it might be age. Well I'm here to tell you it is > not. I am only 38 > yrs > old this Wednessday, Sept. 5th. > I unfortunately have more than just PLS. I have > Psoriatic Arthritis > in > every joint scince the age of 4. I have Degenerative > Disk Disease in > my lower back, Gout and I have Fibromyalgia. So I > thought my symptoms > could be coming from any one of me issues, but when > you discribed > what > I have been going through so perfectly I knew that > it had to be the > PLS. > I look forward to reading what your Dr. says. > > Gavzy > josh.gavzy@... > > > > > > > > Hi Everybody, > > There has been some discussion lately and some > people had said they > have > > problems or changes in their eyes/vision which may > be caused by > PLS. > > > I have a question today. I know there was > reference to something > called > > " pale optic disc " . How was that found? Does a > regular > opththamologist > > check for that? Do you have any vision changes? > I am having > incidences of > > blurring vision, usually in just one eye at a > time, that seems to > come on > > when I am more tired. Also, I can see small > shiftings in what I > see > on the > > edges of my field of vision. I'm not even sure > how to explain > that, > but > > again it seems to happen more in the evening. All > of these seem to > come and > > go with some times being worse than others. Does > anyone have > anything > > similar? I also have tiny spasms in my face at the > sides of my eyes > > sometimes? It's like the little twitches > everybody gets sometimes > around > > your eyes sometimes, but seems to last longer and > feels different. > > I'd appreciate anyone's comments, I have an > appointment with my > > opththamologist next Wed. and would like to tell > him if anyone has > similar > > events. > > Regards, > > Sue Ellen Ledford > > ===== Thomson, Solana Beach, CA www.geocities.com/mdmfoo/pls.html __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2001 Report Share Posted September 2, 2001 Hi Ed! My opth. said that my occasional flashes in my left peripheral vision are the vitreal sac pulling on the retina. I noticed several at the time my vitreal sac collapsed, but now only occasionally. I am supposed to contact him if they become quite regular, as the sac could be pulling too much on the retina, and possibly detach the retina. Uffda! I certainly do not want that. Hope you are well. Blessings.................. Laurel Re: Eye Problems > > Sue-Ellen-- > I'll join the bandwagon--I have flashes sometimes in my left > peripheral vision and sometimes some shifting. I also have a lot of > " floaters " , too. My Opth. said don't worry about the floaters but I > haven't seen him to ask about the flashes. I'm glad I'm not the only > one! > Let know what your Opth. says, please. > > Regards, Ed ames > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2001 Report Share Posted September 4, 2001 Sue Ellen, Your opthamologist can easily see whether you have a pale optic disc during a routine eye exam. Mine saw it in my eyes years ago. To date I have no visual symptoms associated with it. I've read that a recessively inherited form of HSP can present with slowly progressive spasticity and weakness of the lower limbs, as well as pale optic discs, or speech problems. See DeMichele et al., " A New locus for Autosomal Recessive Hereditary Spastic Paraplegia Maps to Chromosome 16q24.3 " Am. J. Human Genetics, 63:135-139 at 137 (1998). Researchers have found the gene responsible for that form of HSP. The SPG7 gene codes for a protein called " paraplegin " . Casari et al., " Spastic paraplegia and OXPHOS impairment caused by mutations in paraplegin, a nuclear-encoded mitochondrial metalloprotease " , Cell 93:973-983, (1998). The paraplegin gene mutation is recessively inherited. In order to show symptoms, both of one's parents would need to carry the gene, and even then there would be only a 25% chance of getting both copies of the defective gene and ultimately developing symptoms. The disorder in those affected individuals would appear to be sporadic since no one else in their family exhibited symptoms--they were carriers. Mark > Hi Everybody, > There has been some discussion lately and some people had said they have > problems or changes in their eyes/vision which may be caused by PLS. > I have a question today. I know there was reference to something called > " pale optic disc " . How was that found? Does a regular opththamologist > check for that? Do you have any vision changes? I am having incidences of > blurring vision, usually in just one eye at a time, that seems to come on > when I am more tired. Also, I can see small shiftings in what I see on the > edges of my field of vision. I'm not even sure how to explain that, but > again it seems to happen more in the evening. All of these seem to come and > go with some times being worse than others. Does anyone have anything > similar? I also have tiny spasms in my face at the sides of my eyes > sometimes? It's like the little twitches everybody gets sometimes around > your eyes sometimes, but seems to last longer and feels different. > I'd appreciate anyone's comments, I have an appointment with my > opththamologist next Wed. and would like to tell him if anyone has similar > events. > Regards, > Sue Ellen Ledford Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 Sue Ellen the other teen I believe was Sonja someway in Europe. You are correct she has not written in a long time. I too hope she is all right. Flora/Fla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 Hi everybody, I want to thank everyone for their responses to my questions. Some of them fit with my problems, too. I went to the opththamologist and they could not find anything wrong with my eyes. I've been wearing contacts and they even checked to see if the measurements for fit had changed. It had not. They believe the blurring is caused by my eyes being too dry. Some of the medicine I had been taking causes my mouth to be dry, and they said that would be related. I know that doesn't apply to everyone that wrote to me though. They just couldn't find anything to explain the blurring. As for the jerks(spasms) around my eyes, they didn't see any and had no explanation. All I came away with was a prescription for drops to try and a new Rx for eyeglasses. I think I'm going to give up on the contacts, though, just in hopes that will help some of the blurring. Welcome, Josh. I'm glad you found the group. It is nice to hear from other people who are dealing with the same problems, even when you seem so burdened with so much else. There is another lady that used to write in a lot that has had PLS since she was in her teens as well as some type of arthritis and other things. I have not seen any messages from her in quite a while. I hope she's doing okay, too and still reads the e-mails at least. I know most of the time that's all I can do as I don't have a computer at home and can only read it for short periods at work during the week. Thanks again everyone. Regards, Sue Ellen Ledford Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.