RichGotsPots Posted May 23, 2013 Report Share Posted May 23, 2013 My lip biopsy came back positive for it. So now I have autonomic neuropathy and Sjogren's. most likely Sjogren's cause the neuropathy. Hopefully it will lead to better treatments.. Quote Link to comment Share on other sites More sharing options...
dkd Posted May 23, 2013 Report Share Posted May 23, 2013 I have a good friend with Sjogren's and Crohn's. She got the Sjogren's diagnosis first and then started having terrible diarrhea which led to the Crohn's diagnosis. She mainly just takes immunosuppressants--prednisone and humira.Good luck to you. I hope you can find a tolerable treatment. I know my friend had a rough time finding medications that she could take that didn't make her feel worse. Quote Link to comment Share on other sites More sharing options...
blueskies Posted May 23, 2013 Report Share Posted May 23, 2013 I just looked up sjorgrens on wiki. I noticed there is no cure but there are treatments. Like dkd, I hope you find good treatment options. blue Quote Link to comment Share on other sites More sharing options...
issie Posted May 23, 2013 Report Share Posted May 23, 2013 Rich, I'm sure hoping this will make a difference for you. Finding the pieces of the puzzle and getting things put together makes for a lot more peace of mind. Sort of lifts a heavy burden - because, now you are starting to figure things out. Hoping that there will be some sucess in your treatment, now that you know more what you're dealing with.Issie Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted May 23, 2013 Report Share Posted May 23, 2013 Rich,keeping my fingers crossed for you.Hope you'll be able to figure out the best course of treatment, now that you know a bit more about whatever it is that you're facing.Keep us posted.Best of luck,Alex Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted May 23, 2013 Author Report Share Posted May 23, 2013 Thnx everyone! i will certainly keep ya posted Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted May 23, 2013 Report Share Posted May 23, 2013 Wow your diagnosis list continues. Ill have to hassle you and L about this diagnosis. Quote Link to comment Share on other sites More sharing options...
Katybug Posted May 23, 2013 Report Share Posted May 23, 2013 Not that having autoimmune disease is awesome, but finding an accurate dx is! This should really help in getting you on the correct treatment. Awesomeness! Quote Link to comment Share on other sites More sharing options...
ShakeyTheOwl Posted May 23, 2013 Report Share Posted May 23, 2013 Seems strange to say that it is great to have a dx like this, but guessing your quest to find primary cause is closer??I admire your strength to not give up Rich!!This also gets me to thinking about some things have seen Issie post in regards to auto immune at the core of a lot of this. Quote Link to comment Share on other sites More sharing options...
badhbt Posted May 23, 2013 Report Share Posted May 23, 2013 RichDid you have classic symptoms....dry eyes and mouth? Any other symptoms? Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted May 26, 2013 Author Report Share Posted May 26, 2013 I had dry mouth but I always chalked it up to pots because I never had it before my pots flared up bad. And My eyes aren't dry at all during except in the morning when I wake up. I still have to go for a salivary scan and eye testing to see how bad the damage is.. Quote Link to comment Share on other sites More sharing options...
Chaos Posted May 26, 2013 Report Share Posted May 26, 2013 Which type of doc did the biopsy and diagnosed it for you? Quote Link to comment Share on other sites More sharing options...
Foggy01 Posted May 27, 2013 Report Share Posted May 27, 2013 I had dry mouth but I always chalked it up to pots because I never had it before my pots flared up bad. And My eyes aren't dry at all during except in the morning when I wake up. I still have to go for a salivary scan and eye testing to see how bad the damage is..Interesting. We have similar symptoms and I've always had dry mouth and eyes since this started. Maybe I should be tested. Of course I couldn't even get a skin biopsy for SFN so I doubt I can get anything else here. Quote Link to comment Share on other sites More sharing options...
PotsMom Posted May 27, 2013 Report Share Posted May 27, 2013 We have heavy history of both Sjogrens and POTS in our family. I believe there is a definite autoimmune connection with the POTS and many others like yourself. Quote Link to comment Share on other sites More sharing options...
E Soskis Posted May 27, 2013 Report Share Posted May 27, 2013 I didn't have a lip biopsy - I had a blood test ordered to detect Sjorgren and it was negative. I do have AAG but, not Sjorgren - odd because I have the exact symptoms of Sjorgren. Is the lip biopsy the most definitive test? Quote Link to comment Share on other sites More sharing options...
dkd Posted May 28, 2013 Report Share Posted May 28, 2013 My friend's Sjogren's was diagnosed by blood tests. Her Crohn's was diagnosed by lip biopsy (by her dermatologist). Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted May 31, 2013 Author Report Share Posted May 31, 2013 Well having one of either of the two Sjogren's antibodies is the most definitive. If you are negative for them like I was, then they do three other test. They do a salivary scan, eye test and biopsies. There are 2 types of eye tests; one for tear production and the other for dry spots. They have two types of salivary scans. And usually they do both or either a lip biopsy or a parotid biopsy. Out of these 3 types of test the biopsy is the most definitive. So I would say many ppl classified as AAG actually are seronegative other autoimmune disease. In a study Mayo published about the outcome of 6 AAG patients half were seronegative AAG antibodies, yet the same therapy helped those patient who were negative and Mayo hypothesized that they probably have some other underlying autoimmune disease. What I don't understand is why other autoimmune cause neuropathies isn't FDA approved for the same treatments. Even AAG isnt approved for IG and Plasma yet.. Quote Link to comment Share on other sites More sharing options...
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