Stiff Person's Syndrome

[in61wpa]

Hi, I have been going through a lot of testing for symptoms that are puzzling to my neurologist.  I currently have Pernicious Anemia and he said that people with PA would have a higher risk of having other autoimmune diseases.  Particularly in my cause it would be highly like I could have Stiff Person's Syndrome since I have PA.  My systems are consistent with Stiff Person's syndrome and I am being tested for it.    I see that the disease is not curable, however. it can be treated.  My questions is how debilatitng can this disease be?  I currently can only walk arount for about an hour.  I cannot stay in one place for any length of time.  Both of which cause my legs and trunk to become extremely stiff and hard to walk.  If in fact this is what I have,  will I be able to walk or stand more, or will I still be limited in this capacity?  I would appreciate any information you can share on this.

Thank you

[leo2012]

There are currently 3 other medicines Dr, s use to treat this. After my
Appointment I will share what I find out. I have MS, heart failure, arteriosclerosis, connective tissue disease, and a host of other diseases ... symptoms muscles started in early 20's and had a heck of a time getting Ms dx. Age 38. Then muscles started spasms got so bad, ans temporary paralysis in arms would happen 3 to 4months' which I attributed to MS... but when muscles got so hard and painful I went to 9-10. Drs'--- Two even said I didn't need pain medicine any more......

So hang in there. I was finally dx'd with stiff person syndrome in September this year. Started on preds and high. Dose of volume. BIG help. There is hope.

I will let you know the other medicine asap.

Good luck to us all.

God bless!

[Pegasus24]

Hi I was diagnosed with Stiff Person Syndrome, on January 2005. The current medications that I am on are Baclofen, Diazapam, and IVIG. My limitations are not being able to stand, walk, and sitting for too long. I have terrible stiffness in my upper and lower back, and severe aches and pains in my joints.
The specialists that I am currently seeing has told me that, "I am unable to work indefinitely."
Now suffering from depression, sleepless nights, and lonelyness.
I would appreciate any information that you can share with me please.

Thank you

[JJ92]

Hi, I was diagnosed with stiff person syndrome over six years ago. The doctors I had were quite puzzled with it and I went thru the wringer in order for them to find it. I lead a relatively normal life, or for me it is. My limitations are not being able to lift heavy things, weakness, clumbsiness, ringing in ears, fatigue, muscle spasms, lots of pain, etc. I can't walk very good sometimes, but it just depends on the day. I shake alot of the time, but if i take my meds like I should, Im relatively what I consider normal. Cold weather is misery and hot weather is a blessing. From what I understand about it, it can go into remission, which it has been except one other time and just recently my ana titer was positive, which is a sign of a neurological problem. I am back taking prednisone again to knock down my immune system instead of ivig or going to mayo and hopefully it will knock it back into remission again. I wish you the best of luck but don't give up, you'll learn to live with it just as I have.