John - Thank you very much for this information. My Doctor did GADS 65 test on me, results were high so he wants to do Lumbar Puncture so he can have Spinal Fluid tested to see where the Ataxia is coming from. Then he wants me to have IVEG. Do you have information on IVEG (safety, effectiveness-anything I should know)?

I was diagnosed with stiff person syndrome back on 2010 . after many visits with different specialists and being misdiagnosed with ankelosing spondylites
and being treated for about a year for this condition, I had I flare up . then the treatment stop working . and when I ask the reumatologist how to prevent the falls that i was and still experiencing . she realized that i had other condition since, people suffering of spondylits do not fall. So I start again the process on finding out what was wrong with me. I was referred to a neurologist but after many MRIs and other studies he could not figure out what the problem was
He referred me to UCSF they did a blood test that was sent to the Minesota Mayo Clinic for the diagnosis. as of this day i havent received any treatment just valium which is not helping me and my condition seams to be progressing .I believe I have being able to manage the condition by being positive and keeping active working out regularly
Whaay Im seeking now is to find something else to help me with the stiffness and if posssible stop the progression of the disease

Hello fellow members. I have recently been diagnosed with Stiff Person Syndrome. Anyone else get brain fog and your face hurts? And what are the best tips for living with it? Massage therapy help? PT and OT helpful? Thanks.

Hello @bdaniels7 and welcome to Mayo Clinic Connect. I understand you are interested in connecting with others who have SPS to find out if they get brain fog and if their face hurts, along with best tips for living with it.

You will notice that I have moved your post into an existing discussion on SPS in order to allow you to connect with members like @speechless623 @maliakajeme @estelatorres @pattygail @sandra319 @peggi @suzanneleafbrock @bryan_in_dallas and @hammere4 who may be able to provide you some information based on their personal experiences.

Of your symptoms so far, which has been the most challenging?

I have found I am somewhat better if I do keep as active as possible. I do ordinary household chores, ride my recombent bike and I mow my lawn and work on my garden - weather permitting. I have found I get worse if I am not as active as I can be. I certainly cannot do as much as I did before I regressed. I do not have face pain or brain fog - I have very stiff posture and my feet shuffle as I haultingly walk, and my balance is very poor - I have to use a cane if I walk a long distance to keep from falling. I pray for Jesus to help me and He does, I don't know what I would do without Jesus - He is my strength and ever present help in time of trouble.

Hi I wrote several months ago regarding my daughters SPS, she was hospitalized non 11/18/2021 and continues to be although has been transferred a few times to different hospitals. I believe she is in the right place now and further testing is ongoing. Has anyone been diagnosed with PERM associated with SPS? Not sure yet this is definitely where her syndrome has gone but pretty sure also trying to rule out any possible cancers.

Hi! I was diagnosed with atypical SPS in August 2019 at Penn Medicine and then received an expert opinion from Dr. Marinos Dalakas at Jefferson University Hospital. I am GAD negative, which made the diagnosis a bit confusing at first. I am a 40-year old woman living in NJ and am disabled. I am here to talk if anyone wants to.