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Autoimmune? Undiagnosed and don’t know where to go next
Autoimmune Diseases | Last Active: Oct 12 11:44pm | Replies (166)Comment receiving replies
@hopeful33250 I just saw your message from December! Thank you for the info on Dr. Tobin. At the moment, I’m being treated by a neurologist at University of Colorado and think I’m doing OK. Still trying to find my old self, but think I’ll have to settle for new self. CLIPPERS is pretty rare, less than 100 of us lucky people. Think I’ll give Dr. Tobins name to my neurologist. Thank you for the info and interest. Becky
Replies to "@hopeful33250 I just saw your message from December! Thank you for the info on Dr. Tobin...."
who are you seeing at University of Colorado. My daughter has been diagnosed with SFN. So far the only test that was negative was ACHR was a bit elevated - 0.06. She is being treated as idiopathic neuropathy and being treated with lyrica for pain management. I want to see if we can find someone who can try to further diagnose to see if we can determine underlying cause or if IVIG treatment might be suitable for her. She is only 21 and has been dealing with this for the last three years.
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@becsbuddy Hello Becky,
I'm glad that you are doing well at the Univ. of Colorado. I understand what you mean when you say, I'll have to settle for my new self. Adjusting to a new normal is a quantum leap, to say the least. It is so good to have you as part of our Connect community. You have given a lot of encouragement to a lot of people.
Just wondering, Becky, how are you being treated for Clippers? Is there a particular med and/or therapy that is helping you?
I'll gladly celebrate with you as you become acquainted with your new self!