Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 C, I too , as you, have what the doctors call " drop-foot " in my left leg, due to the weakness caused by PLS. With drop-foot, I was having difficulty in walking and tripping. Of course I still have problems with balance (due to side affect from medication), but my Physical Therapist was the one that called my neurologist for a subscription for the AFO and also set up the appointment to have the AFO casting. For me, the AFO has allowed me to put the walker aside for now and use the cane only. If you have not done so, this may be something worth looking into. Have a great week end. Norton Re: Re: Dale, exhaustion, fatigue, LDN Dale, I am very sorry to hear how fast you are deteriorating. I know that how someone comes across really shouldn't make any difference to how we feel about their battle with PLS or any other illness, but you seem such a really good hearted, intelligent person that I can't help but feel it somehow makes it seem worse. Compared to others I first came across with PLS on the internet about 7 or so years ago I thought my progression was relatively fast initially, but it doesn't compare to yours. I have been afraid to write about my experience with LDN so far for fear of bursting the (small) bubble but I felt I just had to in this case because from all I've read and now experienced myself I think there is a reasonable chance it could help you. As says that it sounds like you need to boost your immune system and that is what LDN does. LDN has not had a startling effect on me in terms of reversing any specific symptom, but as I wrote a week or so ago I used to occasionally have a 'good' day where everything becomes easier to do. For example, I walk with a walker but usually find that at least every second or third step and often every step, my right foot tends to drag and my toe catches as I step through (I have almost worn the front part of the rubber sole of a pair of shoes only 3 weeks old down to the toe already whereas it started off extending about 1/4 " beyond the leather). On my good days I find that I rarely drag my foot at all and almost walk as 'normally' as you can when you still need a walker. On LDN now I have had about 10 good days in a row and short periods of feeling almost 'normal' in some little things I have done. Given that it seems it is the combination of chronic fatigue and PLS which is contributing to your decline I feel it is well worth trying LDN. Unless you are a druggie, and I'm sure you're not, it shouldn't make you feel worse and has the potential to at least stop you getting worse and could even regain you a little bit of lost ground. Please at least consider it? :-) Thomson wrote: > Dale, > That probably explains why you are going downhill so fast. If you > could boost your immune system somehow, maybe the PLS would level > off some. > -- . ,-._|\ Covington / Oz \ \_,--.x/ v Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 Ditto . You took the words right out of my mouth. Dale, please. God Bless Yolanda Re: Re: Dale, exhaustion, fatigue, LDN Dale, I am very sorry to hear how fast you are deteriorating. I know that how someone comes across really shouldn't make any difference to how we feel about their battle with PLS or any other illness, but you seem such a really good hearted, intelligent person that I can't help but feel it somehow makes it seem worse. Compared to others I first came across with PLS on the internet about 7 or so years ago I thought my progression was relatively fast initially, but it doesn't compare to yours. I have been afraid to write about my experience with LDN so far for fear of bursting the (small) bubble but I felt I just had to in this case because from all I've read and now experienced myself I think there is a reasonable chance it could help you. As says that it sounds like you need to boost your immune system and that is what LDN does. LDN has not had a startling effect on me in terms of reversing any specific symptom, but as I wrote a week or so ago I used to occasionally have a 'good' day where everything becomes easier to do. For example, I walk with a walker but usually find that at least every second or third step and often every step, my right foot tends to drag and my toe catches as I step through (I have almost worn the front part of the rubber sole of a pair of shoes only 3 weeks old down to the toe already whereas it started off extending about 1/4 " beyond the leather). On my good days I find that I rarely drag my foot at all and almost walk as 'normally' as you can when you still need a walker. On LDN now I have had about 10 good days in a row and short periods of feeling almost 'normal' in some little things I have done. Given that it seems it is the combination of chronic fatigue and PLS which is contributing to your decline I feel it is well worth trying LDN. Unless you are a druggie, and I'm sure you're not, it shouldn't make you feel worse and has the potential to at least stop you getting worse and could even regain you a little bit of lost ground. Please at least consider it? :-) Thomson wrote: > Dale, > That probably explains why you are going downhill so fast. If you > could boost your immune system somehow, maybe the PLS would level > off some. > -- . ,-._|\ Covington / Oz \ \_,--.x/ v Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 I will talk to my neur again. Last time she felt that she had seen nothing suggesting it would help but with what is happening to me she might figure, what do I have to lose? I have tried just about everything else over the years, usually paying for it from my pocket... So excuse me if I seem a little skeptical, it's just I have gotten my hopes up so many times over the years. , I'm sorry, could you send me the pointer to the mail web page, I can't find it now... Do it privately, everyone is probably sick of it by now ;-) dale Re: Re: Dale, exhaustion, fatigue, LDN > Dale, > > I am very sorry to hear how fast you are deteriorating. I know that how > someone comes across really shouldn't make any difference to how we feel > about their battle with PLS or any other illness, but you seem such a > really good hearted, intelligent person that I can't help but feel it > somehow makes it seem worse. Compared to others I first came across > with PLS on the internet about 7 or so years ago I thought my > progression was relatively fast initially, but it doesn't compare to yours. > > I have been afraid to write about my experience with LDN so far for fear > of bursting the (small) bubble but I felt I just had to in this case > because from all I've read and now experienced myself I think there is a > reasonable chance it could help you. As says that it sounds > like you need to boost your immune system and that is what LDN does. > > LDN has not had a startling effect on me in terms of reversing any > specific symptom, but as I wrote a week or so ago I used to occasionally > have a 'good' day where everything becomes easier to do. For example, I > walk with a walker but usually find that at least every second or third > step and often every step, my right foot tends to drag and my toe > catches as I step through (I have almost worn the front part of the > rubber sole of a pair of shoes only 3 weeks old down to the toe already > whereas it started off extending about 1/4 " beyond the leather). > > On my good days I find that I rarely drag my foot at all and almost walk > as 'normally' as you can when you still need a walker. On LDN now I > have had about 10 good days in a row and short periods of feeling almost > 'normal' in some little things I have done. Given that it seems it is > the combination of chronic fatigue and PLS which is contributing to your > decline I feel it is well worth trying LDN. Unless you are a druggie, > and I'm sure you're not, it shouldn't make you feel worse and has the > potential to at least stop you getting worse and could even regain you a > little bit of lost ground. Please at least consider it? :-) > > > > Thomson wrote: > > > Dale, > > That probably explains why you are going downhill so fast. If you > > could boost your immune system somehow, maybe the PLS would level > > off some. > > > > -- > > . > ,-._|\ Covington > / Oz \ > \_,--.x/ > v > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 Hi N, Thanks for the suggestion but my balance is far too poor at the moment for me to consider AFO's. I have been using a walker for about 7 years now and can't envisage me being brave (possibly silly??) enough to try taking even a couple of steps without it, even in AFO's. Maybe if the LDN improve my strength and balance further. Thanks, C Norton wrote: > C, > > I too , as you, have what the doctors call " drop-foot " in my left > leg, due to the weakness caused by PLS. With drop-foot, I was having > difficulty in walking and tripping. Of course I still have problems with > balance (due to side affect from medication), but my Physical Therapist > was the one that called my neurologist for a subscription for the AFO > and also set up the appointment to have the AFO casting. For me, the > AFO has allowed me to put the walker aside for now and use the cane > only. If you have not done so, this may be something worth looking > into. > > Have a great week end. > > Norton Quote Link to comment Share on other sites More sharing options...
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