Hi Pebbles, we have an EDS group here on Ben's Friends, I am a helping hand there. Let me get you the link. Please feel free to join it! There are some great folks there who understand exactly what you are going through.
Pebbles said:
I live in Arkansas but went to the Sjogren's Center at John Hopkins and saw Dr. Baer plus specialists in every area that Sjogren's might affect. It was definitely worth the cost and the time to go. Although I have Sjogren's, Raynauds and lots of gastro issuses, I still had other strange symptoms and Dr. Baer immediately knew he was seeing Ehlers Danlos. He is an excellent diagnostician and kind and concerned. He calls me back, not a nurse. Great Experience.
Hope all goes well for you tomorrow! Sending good thoughts your way!
BTW, here's a laugh for you. I sometimes shorten screen names, like my friend purplebutterfly, I sometimes shorten to pb, and almost did that with you and thought "oh no, that will never do".
Don't feel bad, my brothers bought my mom a beautiful handbag one christmas, had her initials embroidered on the front, not even thinking what else they stood for! 'PMS'! ha! She laughed it off and used it until it was in tatters!
Johns Hopkins was where I went and finally had my autoimmune disease (not specific, but they recognized that I had one) confirmed. I also recommend them. They at least acknowledged to me that it takes years to be diagnosed and did not brush me off. Of course, by then, I was pretty sick, even though my bloodwork was barely positive, then neg.
SK said:
Hi Pebbles, we have an EDS group here on Ben's Friends, I am a helping hand there. Let me get you the link. Please feel free to join it! There are some great folks there who understand exactly what you are going through.
Pebbles said:
I live in Arkansas but went to the Sjogren's Center at John Hopkins and saw Dr. Baer plus specialists in every area that Sjogren's might affect. It was definitely worth the cost and the time to go. Although I have Sjogren's, Raynauds and lots of gastro issuses, I still had other strange symptoms and Dr. Baer immediately knew he was seeing Ehlers Danlos. He is an excellent diagnostician and kind and concerned. He calls me back, not a nurse. Great Experience.
Gosh, the same thing happened to me, Bigmama. Complete dismissal by the doctor. The thing is -- There is NO test that proves we do NOT have Sjogren's so the symptoms should never be ignored. My mouth was so dry and I looked up the causes for that --- this is all I found (1) side effect from a drug (2) salivary tumors -- which would be large and visible (3) an autoimmune attack. If anyone has such a dry mouth and does not have (1) or (2), a good doctor should address the symptoms as an an autoimmune attack -- in my book.
Hi Pebbles, we have an EDS group here on Ben's Friends, I am a helping hand there. Let me get you the link. Please feel free to join it! There are some great folks there who understand exactly what you are going through.
Pebbles said: Thanks, I also am on the Ehlers Danlos Foundation Facebook and they are wonderful. I just got a call from Johns Hopkins because the doctor looked at the MRI of my pancreas and wants to see me. It is expensive but their expertise is worth the trip, They have an Ehlers Danlos Clinic as well as the Sjogren's Center.
I live in Arkansas but went to the Sjogren's Center at John Hopkins and saw Dr. Baer plus specialists in every area that Sjogren's might affect. It was definitely worth the cost and the time to go. Although I have Sjogren's, Raynauds and lots of gastro issuses, I still had other strange symptoms and Dr. Baer immediately knew he was seeing Ehlers Danlos. He is an excellent diagnostician and kind and concerned. He calls me back, not a nurse. Great Experience.