How nice of you, John! Thanks so much!
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Hello, I have UCTD recently diagnosed to add to my list of AI diseases.. I have Rxs for Plaquenil and lowest dose anti-depressant for pain. I sleep 11 hours each night and would sleep longer if my little dog didn't wake me for potty. I am as active as I can be and eat well but I still fight fatigue. I have hit a plateau and sometimes I wonder if it will ever get better.
Sat, Apr 13 3:14pm · Need help with Mystery Illness--Possible Sjogren's Syndrome?? in Autoimmune Diseases
That is so interesting, Lioness! Thanks so much. I am a lover of mustard and vinegar. It also helps with my digestion. A lot of people I know take a daily teaspoon of local honey and another of vinegar for good health!
Sat, Apr 13 11:04am · Need help with Mystery Illness--Possible Sjogren's Syndrome?? in Autoimmune Diseases
Derby Fever, I agree with Lioness that the Epsom salts can be helpful. If you can, you may try putting it in bath water for a relaxing soak. It is actually therapeutic. I have heard of pickle juice and vinegar reducing inflammation. Is that right, Lioness? How is pickle juice like mustard? Would you elaborate on this for us? Thank you.
I personally believe the problem you describe with doctors misdiagnosing people with Autoimmune conditions is common in many medical communities. There are so many of them and sometimes I personally believe that it is easier to diagnose the most common diseases…it's faster and takes less work to research it, test for it or discuss with other doctors. One of my own specialist doctors told me that, in regard to one particularly troublesome symptom that I reported to him, he "didn't have anything for that." Wait? What? I asked him because I knew he would be able to address it. Yet he brushed it off and that was that. He certainly did not refer me to anyone else either. That was really a punch in the gut without any further discussion. Yet I am stuck with him, at least for now. Lisa, I am glad you still have the ability and courage to pursue help. We AI patients need support in many different ways and I am grateful for it wherever it becomes available to me. Thank you for sharing with us. It is a tough road but you can do this. One of my doctors told me "Stress is not your friend." That was simple enough for me to remember and a goal that I reach for daily. Perhaps it would help you too.
Fri, Apr 12 4:55pm · Primary Biliary Cholangitis and Autoimmune Hepatitis in Transplants
I meant to ask you, Rosemary, perhaps you can point me in the right direction. I am hearing more and more about the use of CBD oil for the liver inflammation (etc.) and the good results it gives. I am aware of everything I put in my mouth and filter it through "is this going to hurt me or help me?" I would like to know what the truth is. What research, if any, has been done on the effects on the liver? Thank you.
Fri, Apr 12 4:44pm · Primary Biliary Cholangitis and Autoimmune Hepatitis in Transplants
Hello again, Rosemary. I came back over to read your message again. I was not familiar with vitiligo and researched it a bit. But I was familiar with PSC because my GI first considered it (among other conditions) before he sent me to Vanderbilt in Nashville for a liver biopsy. Your AI experiences have been so drastic, and I am so sorry for all you have been through. I have quite a "collection" of AI diseases now, so I try to learn something new everyday. My doctors have helped me, bless their hearts, but they can't be at my beck and call every time I develop a new symptom! 😉 Since the PBC diagnosis, my experience has been that new symptoms usually turn out to be a new diagnosis. I certainly hope you have not developed additional AI conditions. You have had enough trauma for a lifetime!
Thank you for sharing with us here.
Thu, Apr 4 8:11am · Primary Biliary Cholangitis and Autoimmune Hepatitis in Transplants
Thank you, Charlie. I assumed that, and that really works well if you have a cold or a simple problem. With AI diseases, nothing is ever simple and it can be a challenge to choose exactly what they need to hear. I have learned that it depends on who you ask about a symptom. if you have a rash, for example, and you go to the doctor. Your primary care may say that something irritated your skin and you should use a good lotion to keep your skin from getting dry. The dermatologist may tell you that you have dermatitis and prescribe a cortisone cream to use a couple of weeks and see if it goes away. If you took that rash to an allergy specialist, they may tell you that you are allergic to a food. If you took that same rash to a rheumatologist, you may hear that it is a symptom of an autoimmune disease that could be life threatening. If you went to a hematologist, they may say you have a blood disorder. And on it goes for the complicated patient who most often hears "Well, that's not typical" and recommends you see another specialist.