Guest guest Posted November 8, 2001 Report Share Posted November 8, 2001 Hi , Maybe HSP? But maybe not, if it's just one leg that is affected. It's too bad neurologists can't all be up on these rare disorders. There is A LOT of misdiagnosis. HSP is a cousin to PLS. It is degeneration in the ends of the long axon in the spinal cord. It causes spastic paraparesis (stiffness and weakness) in the lower extremeties. It is slowly progressive. It affects both sides pretty much the same. HSP can also have other symptoms, but the above is the hallmark. There isn't always evident family history, for many reasons, so that's why some people get diagnosed with PLS when it is sometimes HSP. good luck, Kathi HSPer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2001 Report Share Posted November 8, 2001 , couldn't have said it better everything she has said was true for me too first the right leg dragged then extreme fatigue then burning sensation in the right arm but that comes and goes sometimes it does show up for months at a time. I have tried vitimins,excersise etc. I finally made up my mind to get back to LIFE do what I can and try not to worry about what I can't fix. I know its hard at first you try everything humanly possible but the fact is we have to wait for science to try and figure this thing out. Some of us are at the beginning and some of us have been around a long time (that's a good thing). Like said find yourself a good neurologist that's a start. I have had PLS for 6 years now and during that time I have stayed about the same. I started to have voice problems in 1991 but had no other symptoms so I really don't know if that was the start of PLS so maybe I have had this for 10 years?? Everyone will be different some worse then others no one really knows why. Keep your chin up and the best thing is talk to the bunch of us.. Flora/St sburg Fl. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2001 Report Share Posted November 8, 2001 --- Orme wrote: > I would like to know if anyone diagnosed with PLS > has symptoms in only one > leg, or in only 1 area for a period of time, not > affecting any other areas , My first symptom was in my right leg only. I had foot drag only when I was tired. This went on for approx. 2 years, but during that time, I had minor problems with my right arm feeling tired, then slight problems started in the left leg, but they were really slight, and my other main symptom was excessive and overwhelming fatigue. I believe others have had similar onset of one limb. It can take a long time for other symptoms to develop. The bad news is that your progression might be so slow that it will take more time before your disease " reveals " itself fully. But that might be the " good news " , depending on how you look at it. :-) I know it is really frustrating, knowing something is going wrong and not having an answer as to what it is. You want to get a diagnosis, so you can do something to halt or slow the progression. You feel that if you wait much longer, you'll lose more function, and that is really scary. At least, that is how I felt prior to my diagnosis. Somehow, I felt if I had a diagnosis, I could then come up with a " plan " to make it get better, or at least, stop it from getting worse. Unfortunately, getting a diagnosis leads to whole set of new problems. There just isn't enough known about motor neuron diseases in general. And since there are so many variations, the individual disease populations are small, further hampering research that might lead to therapies. So if you get a diagnosis of PLS, then the reality hits that you can't do anything to stop the progression of the disease. That is really depressing! I'm not sure what is worse, not knowing or knowing and not being able to do anything about it. Either way, you feel pretty helpless! I would suggest searching out a " PLS " friendly neurologist. Someone that has a very solid grasp on what PLS is. You can search for one at this site: http://www.wfnals.org/Clinics.htm That is how I found my neurologist, Dr. Armon. I looked for mention of PLS or experience in diagnosing difficult cases. Best of luck in your search, ===== Thomson, Solana Beach, CA www.geocities.com/mdmfoo/pls.html __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2001 Report Share Posted November 9, 2001 Hi , This is Beth! Nice to meet you! I first started to develop symptoms in 1991 - only in my legs. And that is where I am today! My walking has gotten much worse since then tho. Foot drop, loss of balance, staggering, etc. I finally swallowed my pride in 1999 & started to use a can. I had AFO's for a while but one neurologist said not to use them because they were causing the big muscle on the back of my legs to stiffen more. Because of foot drop I tried to wear them again recently. And now they don't help with my foot drop at all. I had a terrible time getting a diagnosis. Wasn't until 1998 at the Mayo Clinic. Take care. Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2001 Report Share Posted November 9, 2001 Hi , I have a friend with only one leg involved for over 14 years. He was persistent and finally found a Neuro who DXed the problem after 12 years. He found an MS lesion causing the problem. It was always there, just hard to see. So far he has no other problems. Good luck, and count your blessings! Alan Kirk Re: Celebrex and SSDI>>> > Dear :> >> > We received first check for Nov, Oct, and Sept. Dx was on Feb. 6, 2001.> We> > applied in August. Looks like they figured six months. We will notrock> > the boat since our doctor did not think that they would give it to useven> > though he felt that it was warranted.> >> > Also, for those that were discussing Celebrex, according to the info I> found> > it is a drug for arthritus pain. For some reason, I thought that those> who> > were discussing it, were using it like we use anti-oxidants. Do I have> this> > drug mixed up with another drug?> >> > Thanks,> >> > Gene and Dollie> >> >> >> >> > _________________________________________________________________> > Get your FREE download of MSN Explorer athttp://explorer.msn.com/intl.asp> >> >> >> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2001 Report Share Posted November 11, 2001 - I'm sure it's who you should give the credit to. She mentioned it last week or so. I found a website for FOOT SOLUTIONS also after she mentioned it. Gentner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2001 Report Share Posted November 11, 2001 Beth,and anyone one else, Hi! I just got AFO's and it has been one big educational experience. The AFO's did not work to help the foot drop like I was told. I finally found and went to a Store called Foot Solutions. They helped me find a pair of shoes that the AFO's work in and the very best little thing called a GEL TOE CREST ( I can't remember who on PLS friends mentioned them but thank you so much!). No more toe curl (or very little under stress), very little pain now from toe curl. My balance has greatly improved, just how many falls I didn't have to suffer God only knows. The gentlemen who helped me said that the muscles would remember and that the toes wouldn't curl after I took them off (right!). Well he was right, in the morning when I get out of bed my toes don't curl and I don't fall and no pain from muscle spasms in my feet. I now walk and stand better (with my walker), and getting up from a sitting position is so much easier. I use the Toe Crests all the time now. I hope that they well help other people like they have helped me. I was falling backwards and now with the AFO's and the toe crest I am feel under more under control. Thank you again for being there, B.,Oregon ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2001 Report Share Posted November 11, 2001 Hi , congrats on your AFO, shoes, and inserts. WOW, sounds like you're ready to go dancing!!! ) these " gel toe crest " thingy's.....can we get them anywhere? I also have the toes like fists. I take meds for them....which helps a bit, but I'd so love to get off some of these meds and try things naturally. even with meds, though,, they still fist up when I'm tense or trying to go up stairs and sometimes when I drive. Does your new AFO bend at the ankle and have hinges and springs? I know Beth's do not......I've been meaning to send you a pic, Beth, of my AFO's so you know what I'm talking about. my toes don't drag at all with these kind......BUT, it is still kind of difficult to drive. BUT, I'm gonna get out there and drive till they take my car away from me! LOL maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2001 Report Share Posted November 11, 2001 Thank You!!!!!!!! Gentner and , B. Oregon ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2001 Report Share Posted November 11, 2001 Maggie, " Recommended for the Toe Pain by (Foot.com) " ,Website for info - www.footsolutions.com . The brand name is ANTI-SHOX, APEX, Gel toe crest. I have been trying to find somewhere I can order them but haven't had any luck so far. I just can't believe how they can make such a difference. I went to my therapist on Thursday and he couldn't believe how easily I was able to get up and I didn't have my AFO's on just the toe crests. I paid $11.00 a each, one left one right and that is all they had. If someone finds a place where we can order them please let me know. I am also taking meds for the toe clawing and I was told that the Baclofen pump would help. If I up the Baclofen then the rest of my body is too weak. I hope that this info helps. Take care B. Oregon ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2001 Report Share Posted November 11, 2001 Maggie, By the way my HMO would not pay for the AFO's that bend at the ankle. The MDA wanted me to have them but my HMO would only pay for the cheapest AFO's. MY HMO is noted for not helping so the MDA has made an exception in my case and has been helping me. I really don't think they are going to be happy when they see what I have. Another Hospital in the area said they would help me but first I had to try mine. I well see in February when I go back to the MDA. I would also like to see what your AFO's look like. Take care, B. Oregon ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 Hi Maggie! I still can't imagine your AFO's with hinges & springs! So, please do send me a picture if you can! I'm happy to hear that they've helped with your dragging toes. Sometimes my toes are about a mile behind me. They need to catch up to the rest of my body!! It was really hard to drive with the solid AFO's that I had. I did get used to it but it wasn't easy. And the falls that I had with them were worse than without the AFO's. Take care. Keep in touch. Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 I am interested in this Toe Crest you are talking about. I do have curling toes however I do not walk but was wondering if they would help my toes. I do wear shoes so I can stand at the bathroom sink for a few minutes. I'd like any help I could get on this. Re: One extremity > Beth,and anyone one else, Hi! I just got AFO's and it has been one big > educational experience. The AFO's did not work to help the foot drop like > I was told. I finally found and went to a Store called Foot Solutions. > They helped me find a pair of shoes that the AFO's work in and the very > best little thing called a GEL TOE CREST ( I can't remember who on PLS > friends mentioned them but thank you so much!). No more toe curl (or very > little under stress), very little pain now from toe curl. My balance has > greatly improved, just how many falls I didn't have to suffer God only > knows. The gentlemen who helped me said that the muscles would remember > and that the toes wouldn't curl after I took them off (right!). Well he > was right, in the morning when I get out of bed my toes don't curl and I > don't fall and no pain from muscle spasms in my feet. I now walk and > stand better (with my walker), and getting up from a sitting position is > so much easier. I use the Toe Crests all the time now. I hope that they > well help other people like they have helped me. I was falling backwards > and now with the AFO's and the toe crest I am feel under more under > control. Thank you again for being there, B.,Oregon > ________________________________________________________________ > GET INTERNET ACCESS FROM JUNO! > Juno offers FREE or PREMIUM Internet access for less! > Join Juno today! For your FREE software, visit: > http://dl.www.juno.com/get/web/. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 I agree! The solid AFO's were awful. Almost impossible to drive in. And the falls that I had in them hurt so much. Seemed like with them on I went crashing to the floor without any control at all. I had one pair of shoes that I could wear them in. The Mayo Clinic said that these AFO's would be a big help to me. But then another local neurologist said no - that they were causing the big muscle or tendon or whatever on the back of my legs to stiffen up even more. As usual, no one could agree what would be the best thing for me!!! Finally, I decided that no one knew & they were just grasping at straws! Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 I have had hinged AFO's for several years, after trying solid AFO's for several months. The solid AFO's were awful. I couldn't go down hills or stairs, nor could I drive. Life is so much better with the hinged ones. Mark > Hi Maggie! > I still can't imagine your AFO's with hinges & springs! So, please do send > me a picture if you can! I'm happy to hear that they've helped with your > dragging toes. Sometimes my toes are about a mile behind me. They need to > catch up to the rest of my body!! > It was really hard to drive with the solid AFO's that I had. I did get used > to it but it wasn't easy. And the falls that I had with them were worse than > without the AFO's. > Take care. Keep in touch. Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 Mark, I was told that I could not have a hinged AFO because my ankle turns and that the sold AFO well help (wrong). Do you have the problem with your ankles? What kind of AFO do you have? What company made them? I am having the same trouble with stairs and hills, I take the right one off to drive. I like the stability when standing and was told I just had to get used to them. Thank you, B. Oregon ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 , I don't know if the toe crests well help you but all we can do is try. There is one very important thing the ALL Gel Toe Crest is the one that worked for me. The one's with the elastic around the toe cased my foot to go into spasms and my toes to claw more. Take Care, B. Oregon ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 , I don't know if the toe crests well help you but all we can do is try. There is one very important thing the ALL Gel Toe Crest is the one that worked for me. The one's with the elastic around the toe cased my foot to go into spasms and my toes to claw more. Take Care, B. Oregon ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2001 Report Share Posted November 13, 2001 CONGRATULATIONS CLAUDIA. WE SURE ARE HAPPY THAT HAS GONE THROUGH FOR YOU. BONNIE & DON Re: Re: One extremity > Hi! Everyone I just had to share, I got my SSDI!!!!!! It has been so > hard. I don't know when I well get my first check but it should be > coming. THANK YOU ALL FOR YOUR HELP!!!! > B. Oregon > ________________________________________________________________ > GET INTERNET ACCESS FROM JUNO! > Juno offers FREE or PREMIUM Internet access for less! > Join Juno today! For your FREE software, visit: > http://dl.www.juno.com/get/web/. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2001 Report Share Posted November 13, 2001 , I don't have a problem with my ankles--other than they are somewhat stiff. But I don't understand how a hinged AFO would be a problem if your ankle turns. The hinge allows a short range of motion. And that range of motion begins with your foot at a 90 degree angle to your lower leg and ends with your toes raised somewhat. (This allows you to do stairs and hills easier.) It is impossible to turn my ankle, even slightly, with hinged AFO's. I don't know the name of the company that made my AFO's. My neurologist, a PT, and the AFO company's technician were all together and working as a team to determine the best AFO's for me. They took a plaster molds of my feet and lower legs, and decided that hinges were OK. Then the company custom made the AFO's using the plaster molds. Once they were made and fitted, I returned several times for minor adjustments to prevent irritations to a couple of places on my legs. I started by wearing the AFO's for 20-30 minutes the first day. The next day (and every day thereafter) I added 20-30 minutes. I now put them on after my shower, and keep them on until going to bed. In addition to significantly reducing toe drop, they also help to stabilize my walking. I recommend that anyone with gait problems (all of us) ask your neurologists about them. Mark Weber > Mark, I was told that I could not have a hinged AFO because my ankle > turns and that the sold AFO well help (wrong). Do you have the problem > with your ankles? What kind of AFO do you have? What company made them? I > am having the same trouble with stairs and hills, I take the right one > off to drive. I like the stability when standing and was told I just had > to get used to them. Thank you, B. Oregon > ________________________________________________________________ > GET INTERNET ACCESS FROM JUNO! > Juno offers FREE or PREMIUM Internet access for less! > Join Juno today! For your FREE software, visit: > http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2001 Report Share Posted November 13, 2001 Hi !! I didn't have the knowledge to help you but I'm so happy that you get your SSD!!! I know how much of a relief it is when I got my retirement disability approved from the federal govt. which is where I worked. Take care. Congratulations!!! Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2001 Report Share Posted November 13, 2001 Mark, Everything that you said sounds right to me and that is also what the MDA said. How far does you foot plate go up your foot? Are your AFO's padded? Thank you so much for your help! B. Oregon ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2001 Report Share Posted November 13, 2001 Thanks for the reply and I'm sure I could not use it as my toes are bad now anything tight would be worse. Re: One extremity > , I don't know if the toe crests well help you but all we can do is > try. There is one very important thing the ALL Gel Toe Crest is the one > that worked for me. The one's with the elastic around the toe cased my > foot to go into spasms and my toes to claw more. Take Care, B. > Oregon > ________________________________________________________________ > GET INTERNET ACCESS FROM JUNO! > Juno offers FREE or PREMIUM Internet access for less! > Join Juno today! For your FREE software, visit: > http://dl.www.juno.com/get/web/. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2001 Report Share Posted November 13, 2001 Hi! Everyone I just had to share, I got my SSDI!!!!!! It has been so hard. I don't know when I well get my first check but it should be coming. THANK YOU ALL FOR YOUR HELP!!!! B. Oregon ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2001 Report Share Posted November 13, 2001 , The foot plate on my AFO's go right up to (almost) the very end of my toes. The AFO's are padded--but only in certain areas. The areas around the hinge, the ankle, and the foot are all padded. Mark > Mark, Everything that you said sounds right to me and that is also what > the MDA said. How far does you foot plate go up your foot? Are your AFO's > padded? Thank you so much for your help! B. Oregon 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.