Guest guest Posted May 20, 2005 Report Share Posted May 20, 2005 Kiwi , It's good to know there are some willing neurologists out there. Glad you found one of them. Have you joined a Penny Team? If not, I'd be honored to have you on my team. Ronnie in WV Update from Kiwi > Hi > > I don't post often but alwaays read the messages and get a lot of > information from the group. Wanted to share because I went to my > neurologist this week. Unlike others I found the visit quite > supportive. He confirmed things I already knew - like my progression > is still slow. For the first time ever he used the term PLS. Before > now its always just been upper motor neuron - so I guess he now > feels that the progression has been slow for long enough to call it > PLS. I went to him first in 2001 so its now been 4 years. I > take 20 mg of Baclofen a day and told him I didn't think it was > making a difference. I can still walk without any aids but its > very stiff and I do sometimes trip over my feet. My hands are > getting stiffer and my speech quite slurred. He agreed that at > that level Baclofen probably wouldn't make much difference but > indicated that everyone is unique in their response to baclofen > and although encouraging me to increase the dose - left the > decision to me. I talked to him about LDN and he hadn't heard > of this as a treatment for PLS but was willing to prescribe it for > me. I'll think about that for a bit longer. All in all I > found the visit useful and it gave me the feeling that I have got > help when I need it. I'll keep going to him about once a year. > He's also willing to write to me if I come across anything to discuss > in the mean time. I feel very lucky. > > A few other things in response to other posts: > > Maureen - I can still roll my eyes but crossing them is more > difficult - I'm not sure if this is part of PLS or just getting older > My tongue is a lot slower than it used to be - which affects my > speech and also shows up when the medics ask me to move it from > side to side. > And here in NZ we can buy frozen cookie dough - so I'm sure you > should be able to find it in Aus. as we share so many food products. > > All the best to everyone > from kiwi land. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2005 Report Share Posted May 20, 2005 Ronnie I'd be glad to come aboard. However we gave up pennies a long time back. I'll have to think about the best way to join in. Kiwi / Update from Kiwi Kiwi , It's good to know there are some willing neurologists out there. Glad you found one of them. Have you joined a Penny Team? If not, I'd be honored to have you on my team. Ronnie in WV Update from Kiwi > Hi > > I don't post often but alwaays read the messages and get a lot of > information from the group. Wanted to share because I went to my > neurologist this week. Unlike others I found the visit quite > supportive. He confirmed things I already knew - like my progression > is still slow. For the first time ever he used the term PLS. Before > now its always just been upper motor neuron - so I guess he now > feels that the progression has been slow for long enough to call it > PLS. I went to him first in 2001 so its now been 4 years. I > take 20 mg of Baclofen a day and told him I didn't think it was > making a difference. I can still walk without any aids but its > very stiff and I do sometimes trip over my feet. My hands are > getting stiffer and my speech quite slurred. He agreed that at > that level Baclofen probably wouldn't make much difference but > indicated that everyone is unique in their response to baclofen > and although encouraging me to increase the dose - left the > decision to me. I talked to him about LDN and he hadn't heard > of this as a treatment for PLS but was willing to prescribe it for > me. I'll think about that for a bit longer. All in all I > found the visit useful and it gave me the feeling that I have got > help when I need it. I'll keep going to him about once a year. > He's also willing to write to me if I come across anything to discuss > in the mean time. I feel very lucky. > > A few other things in response to other posts: > > Maureen - I can still roll my eyes but crossing them is more > difficult - I'm not sure if this is part of PLS or just getting older > My tongue is a lot slower than it used to be - which affects my > speech and also shows up when the medics ask me to move it from > side to side. > And here in NZ we can buy frozen cookie dough - so I'm sure you > should be able to find it in Aus. as we share so many food products. > > All the best to everyone > from kiwi land. > > > > > > > Quote Link to comment Share on other sites More sharing options...
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