Stiff Person Syndrome: Want to connect with others

Welcome to Connect, @sandra319.
I moved your message to this existing discussion about Stiff Person Syndrome so that you could meet @pattygail. I'd also like to invite @stayfree to join us here. She was talking about GAD65 here http://mayocl.in/2lSKMjs and may have some thoughts to add.

Sandra, if you read through the past messages of this discussion, you'll see that @johnbishop has provided a number of useful resources about SPS. When were you diagnosed? What symptoms are you experiencing?

I was diagnosed a few weeks ago with two gad 65 tests that were higher than 250. The doctor spoke to another who had done iag testing and that was .93 sent to Mayo Clinic now my doctor wants me to do iag testing. I have all the stiff person. Symptoms. Stiffness tripping startle easy stress sets it off. My ivig is on hold I was due to start Monday. He wants iag test done. He ordered 2 gad 65 now is waffling.

yes it was with the blood test and spinal tap I have been diagnosed for about 7years

Best wishes to you

what were some of your signs of stiff person

Dropping things stiffness tremors falling chronic pain high gad 250 plus can't walk or sit long etc.

I didn't have tremors but had a lot of pain in my leg at night it would act like ressless leg it took about 2years before I was diagnosed with stiff person

Best wishes to uou

Suzanne, I also have stiff persons syndrome. I was just diagnosed last summer. I don't have it too bad as it just occasionally effects my left leg and mid-section to where I stiffen up. I am now taking medicine for that but I also tried IVIG and I don't think it helped. My biggest problem is I can't walk through parking lots, or even walk outside without some kind of assistance and I get kind of dizzy and scared. I also tend to have a problem when walking in front of other people unless I have my cane or walker with me. I didn't know if this disease tends to get worse or not. I do much better in the summer it seems than in the winter. I just can't even walk down the sidewalk on my own, however I can walk in my own home and my office without any assistance. Makes no sense to me. I am on an anti-anxiety drug but it doesn't seem to help this part of it. I guess I'm lucky as I don't have pain.

jHi Nutmeg, These are not problems that my husband has mentioned to me, so I don't have experience with them. I sure hope that you can find answers and relief. My husband says that changes in the weather and temperature affect his symptoms. He does get dizziness sometimes, but that might be inner ear disorder and not Stiff Person Syndrome. I don't know, I'm not a doctor, but just trying to help.