Mayo Clinic Connect
Am interested in connecting with people who have this or are significant others of people who have this condition. (I’m in the latter group).
Liked by mcrchicago
A dear friend was just diagnosed. I would be interested in hearing from others.
We tried a number of drug therapies as well as plasma exchange for my husband. Some people respond better than others to different combinations of drugs. The chronic pain has its ups and downs, I’ve come to think of it as the degree of pain that he is encountering because it is never an absence of pain. For him the plasma exchange did not help; he was to have a series of three, but it was evident it wasn’t helping after the second so we didn’t continue.
Hi Sue – how long has your husband had SPS? Has your Neuro tried him on Diazepam and Baclofen. A lot of SPS’ers use Gabapentin for the pain. Also I’ve recently found out the if your not a diabetic you will not get much benefit from the plasma exchange. We are all different yet we are the same – SPS is funny like that.
Have you tried the Inspire Group as they have a big following for SPS there and wonderful members that offer loads of support.
Wishing you all the best in your search for answers and relief. (I have SPS)
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.
Liked by Kanaaz Pereira, Connect Moderator
You describe almost exactly my symptoms. I’ve had it for more than 20 years. Was finally given a tentative diagnosis in 2008 based on my symptoms and EMG. Basically, everything else was ruled out. I know people wonder why I use a walker when I generally walk pretty well, but if you take it away (unless I’m at home with a cane) I stiffen and cannot walk. I retired in 2008 and my symptoms are much better due to less stress but I’m afraid I will never get away from the walker.
Hi Nutmeg.. I have the same symptoms as you mentioned. I walk well at home but can’t walk in open spaces. I can walk near a wall but panic if I don’t think I can reach something stable. I walk fine if I hold onto to someone. How are you doing now? Did you continue the IVIG? Do you have type one diabetes? I do have hypothyroidism and Pernacious anemia. Thank you for posting.
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