← Return to Stiff Person Syndrome: Want to connect with others
DiscussionStiff Person Syndrome: Want to connect with others
Brain & Nervous System | Last Active: Jun 9 10:56pm | Replies (210)Comment receiving replies
Replies to "Suffering now for 7+years. 2012 DX with Fibromyalgia. Misdiagnosed with MS 2018. 2019 Positive Gluten Intolerance,..."
Hi, @njgenevieve - just wanted to touch base and see how things are going with the stiff person syndrome and also with your doctor visits? Was it determined which specialist was best to care for you?
Sometimes, rarely, SPS is triggered by tumors that is why the neurologist refered you to a cancer specialist. If the tumor was taken care of, then SPS would likely go away.
Hi, @njgenevieve - I'm sorry you feel you're in the twilight zone and you're experiencing some bouncing from one specialist to another. Hoping that one of your doctors can indeed point you in the right direction.
Some of the other members in this discussion may have some ideas on to whom or to where to go now with your stiff person syndrome treatment, like @suzanneleafbrock @msdee @nutmeg @maritakelly @pollyanna777 @ndville and others.
Have you had the chance to follow up with the hematologist/oncologist?