Possible Sjogren’s

[PB4857]

I was diagnosed with PBC in 2005 and have been on URSO since diagnosis. No significant change in my PBC in all these years. Also, have Hashimoto’s 2016, and Oral Lichen Planus 2021. Recently, I was in the ER because I developed a speech issue. My family thought it was a stroke. Bottom line is, all the tests at the hospital and that my PCP ordered were negative for stroke. Best guess by my PCP is it could have been a TIA. Oddly, over a three week period after the incident, if my mouth gets real dry or I’m eating something spicy or dry, or talking for a long period, the speech issue (which is a lisp) comes back. I have no severe soreness or swelling from the OLP. Just wondering if this could be Sjogren’s Syndrome. I have dealt with dry mouth and dry eyes for years. Have any of you that have SS, had symptoms of a speech change and difficulty swallowing? Also, any recommendations for a rheumatologist in the Detroit area?

[lovesoccer]

Wow, you’re dealing with a lot. I do not have the same lived experience with Hashimoto’s or potential Sjogren’s but I extend my moral support. I wish I could do more. Sending continued strength and positivity.

[Artsy123]

you definitely have a lot going on… I myself have PBC and sjogrens. I always had dry eyes. My voice was hoarse post covid that came and went. When it was really bad also felt breathless. My lungs are normal. When ENt checked my vocal cords ( which are good) he said it’s possible sjogrens could cause that. A couple tests later my rheumatologist diagnosed sjorgren. Since she ordered pilocarpine my hoarseness improved. I use lemon water while eating foods. If I miss the med hoarness comes back. I’m learning more as I go. To check out the muscle issues I now have to see neurology. I hope between all the docs you are able to get some relief. You may need to see more than one specialty to sort it out. Sending hope….

[dkester12]

I have PBC along with RA, fibromyalgia and sjogrens. The sjogrens causes many odd issues with mouth dryness to the point of choking feeling. Pilocarpine does help but in the US for me anyway it's pretty expensive because the insurance company doesn't recognize it as a sjogrens treatment. You need a rheumatologist for sure as one auto immune issue always leads to another..

Over the 15 years since diagnosis of PBC I've developed 3 more and seems I'm working on my 4th with some kidney spots... please see a rheumatologist asap. They understand auto immune issues much better than a PC and run totally different tests too.

Best of luck and prayers 🙏