Guest guest Posted January 1, 2010 Report Share Posted January 1, 2010 Hi, my name is and my fiance is Kristie. She is suffering from some rare neuromuscular autoimmune disease/s. She was originally diagnosed with Stiff person syndrome but we have been at the Cleveland clinic for over five months now with still no answers. They don't think she has SPS. We are still lost. Our plan is going to UCSF medical center anywhere from 2-4 weeks to see a neurologist specializing in " rare and hard to diagnose diseases " . I want to keep this first post small and just want to introduce ourselves. Wishing you all a Happy New Year! Sincerely, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 Hi and Kristie, Stiff person syndrome is what some people with PLS (primary lateral sclerosis) as I have, are initially misdiagnosed with. Most people with PLS find LDN to be very beneficial!! Cheers, bsixstring wrote: Hi, my name is and my fiance is Kristie. She is suffering from some rare neuromuscular autoimmune disease/s. She was originally diagnosed with Stiff person syndrome but we have been at the Cleveland clinic for over five months now with still no answers. They don't think she has SPS. We are still lost. Our plan is going to UCSF medical center anywhere from 2-4 weeks to see a neurologist specializing in "rare and hard to diagnose diseases". I want to keep this first post small and just want to introduce ourselves. Wishing you all a Happy New Year! Sincerely, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 Geez I never heard of Stiff person syndrome before but maybe what I have. I have always thought it was arthritis but I seem to be getting stiffer & stiffer. I'm 56 and it is really hard getting up out of chairs, bending over and if I have to get down on the floor for something I have a heck of a time getting back up and have to have something to grab onto. I think I'm too young to have such symptoms any thought on this from anyone? Thanks, Donna ACS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2010 Report Share Posted January 3, 2010 Donna, I don't know if there is a Stiff Person Syndrome, but I started with a lower back problem at 18 and I'm 71. One D.O. told me when I was in my 30's that I had the back of a 90 yr old....how about that one!!! He also thought I had Ankylong Spondy (sp) AS and I've kinda stuck with that dx all my life. Stiff isn't the word for my lower back and upper legs now and calfs. Yrs ago I took an anti-inflammatory med and ended up in the ER with a stomach ulcer. Back was feeling great but the stomach didn't like the med. So I've steered clear of those drugs since then. So I can relate to stiffness...I'm taking LDN for the OA and FM issues. joyce Re: [low dose naltrexone] New Members, Hello! Geez I never heard of Stiff person syndrome before but maybe what I have. I have always thought it was arthritis but I seem to be getting stiffer & stiffer. I'm 56 and it is really hard getting up out of chairs, bending over and if I have to get down on the floor for something I have a heck of a time getting back up and have to have something to grab onto. I think I'm too young to have such symptoms any thought on this from anyone?Thanks,Donna ACS No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.124/2597 - Release Date: 01/02/10 00:22:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2010 Report Share Posted January 3, 2010 Funny you should say this because when I read the references to stiff person syndrome I went over and researched it a bit. I have RA and have become increasingly stiff and sore, with many joints and tendons implicated. I can no longer get up from the floor and am finding anything with stairs or getting in and out of chairs etc very difficult. I am much worse after being still awhile. I had managed to get off my anti-inflammatory DIclofenac and ibuprofen for about 6 months, as I conti nue to try to get good resuts fro, LDN. However this past week I have gone back to ½ dose diclofenac to help manage the pain and stiffness. I think it is the RA progressing and have found the increased stiffness since starting LDN a struggle. I haven’t given up yet though – can still not face the idea of it not working for me and the alternative’ e.g. methotrexate etc. but it does get scary. Nuala From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Donna Sent: 02 January 2010 17:05 To: low dose naltrexone Subject: Re: [low dose naltrexone] New Members, Hello! Geez I never heard of Stiff person syndrome before but maybe what I have. I have always thought it was arthritis but I seem to be getting stiffer & stiffer. I'm 56 and it is really hard getting up out of chairs, bending over and if I have to get down on the floor for something I have a heck of a time getting back up and have to have something to grab onto. I think I'm too young to have such symptoms any thought on this from anyone? Thanks, Donna ACS Quote Link to comment Share on other sites More sharing options...
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