Guest guest Posted September 25, 2003 Report Share Posted September 25, 2003 Yes, two things always get me, PLS is painless and it's slow... I would argue both... I had nerve pain for months, my whole left side just ached until they finally got me on the correct medications. And SLOW, if this is slow I don't want to see fast... dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2003 Report Share Posted September 25, 2003 I'd like to add an additional pain measure--Lidoderm patches. They are self adhesive 4 x 6 patches containing lidocaine, a local anesthetic. You apply the patch to the painful area (up to 3 patches may be used at a time) and wear it for 12 hours. I use one on my painful hip at bedtime and sleep with it. I am more comfortable in the morning as a result of it. When my hyperextended knees hurt, I use a half patch on the outside of each knee joint. The patches were developed to treat the pain of shingles but now are being used for other painful disorders. Dolores Re: PLS and pain > HI all, > > We have a good article at the SPF website about pain. It was written > by Rob Redden, M.D. > > Rob is a family practioner who has HSP and has a lot of trouble with > pain. So he wrote an article on this topic to share with the SPF > community. > > You can read it here: http://sp-foundation.org/articles-pain-print.htm > > Best, > Kathi > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2003 Report Share Posted September 26, 2003 Hi Kathi, You are a gold mine of information. Thanks a lot. Hope some of these work for me. Will keep group updated of results. God Bless Yolanda Re: PLS and pain HI all, We have a good article at the SPF website about pain. It was written by Rob Redden, M.D. Rob is a family practioner who has HSP and has a lot of trouble with pain. So he wrote an article on this topic to share with the SPF community. You can read it here: http://sp-foundation.org/articles-pain-print.htm Best, Kathi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2003 Report Share Posted September 28, 2003 Hi Carolyn, Thanks for your response. The next time I see the rheumatoid doctor I'll ask him about this. I tell you, anything that would alleviate the pain is welcomed. Well..., not anything. You know what I mean. Cortisone is worth a try if it will help. Thanks again. God Bless Yolanda NORD PLS RESEARCH GRANT > > > > > > Friends, > > > > I was notified that the third NORD PLS Research Grant will go to > Dr. Talbot > > (see below). As you recall our first research grants went to > Drs. Fink and > > Siddique. The announcement should appear on the NORD site this > week > > http://www.rarediseases.org/ My contact at NORD included in her > email " Our medical writer > > on staff is very excited about this project, and this > researcher. " > > > > Recipient: > > Talbot, MB > > University of Oxford > > Oxford, England > > > > Study Description: > > Dr. Talbot of Oxford University will study patients with the rare > > neurodegenerative disorder Primary Lateral Sclerosis (PLS) using > new magnetic resonance > > imaging technologies developed in Oxford. This will allow an > assessment of the > > progress of the disease and it is hoped, will allow trials of > treatments in > > PLS patients. PLS is a form of motor neuron disease, related to > ALS (Amyotrophic > > Lateral Sclerosis or Lou Gehrigâ?Ts Disease) but with a number of > atypical > > features, including slower progression and absence of muscle > wasting. Its cause is > > unknown and there are currently no treatment. > > > > ********************* > > Mark's reaction was: > > > > I am very excited about the research grant that NORD > > just awarded. I assume that the " new MRI technology " > > referred to in Dr. Talbot's proposal is diffusion > > tensor MRI. This is a great technology that has the > > potential to be exactly what we need to 1) help > > diagnose PLS & HSP, 2) to objectively measure the rate > > of the disease progression, and 3) to objectively > > determine whether a proposed treatment actually works > > by stopping or reducing the speed of progression. > > ******************* > > Of course, Mark " assuming " isn't fact, but you all know Mark and > know that he > > will be trying to contact the researcher directly and learn all > he can. I > > will be on vacation for almost a month. Mark will post all > information he finds > > out about Dr. Talbot and this technology. Mark has already > located relevant > > abstracts, but I'll leave it to him to pass on. > > > > I personally want to thank everyone who has made these three > grants a reality > > over the last three years. I find great hope in what has been > accomplished > > and what will be accomplished. > > > > Gentner > > > > > > 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.