Hello Laura (@lauramorin) -- I see this is your first post. I would like to welcome you to Mayo Connect and thank you for sharing your story and some great advice. Was your post addressing or responding to a specific member? One way to make sure the person gets notified of your post is to tag them by adding their Connect username (@userxxxx).

Thank you again for taking the time to share your story and what has helped you.

John

Hello (@johnbishop), thank you. I am always happy to share what I have learned if it helps someone else. And yes, I wanted to specifically address ellashab but since this is the first time I have posted I was not aware that I needed to put her name prior to my post until I read your response, (thank you) and then I was not able to go back and edit mine so I hope she sees it.
This is the first I have seen of this page, maybe I will come back and visit :0) have a wonderful day!

Hi @ellashab, the post above from @lauramorin was meant for you. Thanks Laura!

John

Hello @lauramorin,

I'd like to add my welcome to @johnbishop's, and also want to thank you so much for sharing your experiences. Although we haven't heard from @ellashab for awhile, we sincerely hope she is keeping well.
Members in a discussion do get notified with each post, if they are still following the discussion. But it's always helpful to tag or @ mention members, especially if your post is meant for a certain member.

I also hope you will continue to share your thoughts and ask questions; It always helps to hear from someone who has “been there.”

I agree totally as I went 4 years with a "rare" autoimmune that doctors don't really know for sure. I wish there was more research on autoimmune. Make sure you don't have any allergy's or infections. Primary should check gall bladder and all of the normal things that can go wrong. Many times rashes from allergy's are blamed on auto-immune so document when you take medications and anything that results. Even if it takes a couple weeks to show up. Even document vitamins you take, etc.

@johnbishop wow john l have read some of the post. And after l had my surgeries especially the last one for foot drop thats when l started having the problem. I was told it was neuropathy so they gave me tramadol which l try so hard not to take unless l am in so much pain l want to scream. I remember when l had my back surgery l didn't know when l came out of surgery. People came to visit l dont remember anyone. My best friend came as l was asking here did l say something to you l shouldnt have? She said no. And then when l had my foot surgery my doctor said he had to call my gastroenterologist to find out about the meds they gave me in surgery and he was scared when he was telling me the story. He told me when l came to see you, you didnt know who l was or my name. So now l was sent to my first rheumatologist and l didn't know why or what doctor sent me. Then when l went to here she asked me the same question. Then she looked in the computer and found out the whole story. Then she tested my ana twice and told me it can come back positive but really can be negative. Then when l went to the mayo clinic my counts was higher but they didn't tell me to follow-up with a rheumatologist at home instead the neurologist there had me go to 2 psychiatrist and then had me scheduled for the third but cancelled it. Then she said you should go to behavioral therapy but l think she was confused herself because when l first saw her she said lve be a neurologist for a long time and she gave me a website for conversion disorder. Which now they changed the name but it still the same. And l said to myself you may be a neurologist along time but my God is the great physician and he know more than you. So l think they were a little confused because they said l had the symptoms of autoimmune encephalopathy but its not showing up. Well l knew l had that because l had the liver procedure. Then the vascular doctor told me there wasnt any blood flowing to one vein. He was going to talk to his colleagues and if l needed my procedure done again then they would schedule me to come back. They scheduled me to come back l thought l was going to.have the procedure done. I call the department and the nurse said no its a consultation. My grandkids came all the way from Tennessee to have the first Christmas with there grandparents and for one day l saw them and then l was heading to the mayo clinic. I went for the consultation and the next day l.checked out the hotel to come back home. Then l saw my grandkids forban hour before going home to go sleep after the long drive. And the hepatologist out there told me everything l was going through for 4yrs and the doctors here thought l was crazy. So it was good to see him but l wish it was at home instead of a 12hr drive. And then l went to the new rheumatologist and he thought l was out of my mind coming to him since l went to the Mayo Clinic and they didnt refer me to a new rheumatologist or to tell me to get one. So then he ran all these blood work and he thought he wouldn't find anything he was just doing it to please me. And then set me up for a return visit for 6months. Then his nurse calls and says he was sending me a prescription to my pharmacy. Now he wanted to see me in 2months. Now l do like him in spite of what he said because it was my first visit with him. And as l told you before l was to see him today but because of the weather l see him next week. But like l said before they don't know more then God. And l know l will be healed soon because with over 20yrs with cognitive and memory issues to now writing a book and going back to school. Its even shocking my PCP how l got my memory back. He just looks at me everytime l see him just to get shots. I havent seen him for an appointment since February last year and he hasn't seen my records from the Mayo Clinic and they didn't send him any because l never told them about him. So l guess l can have autoimmune encephalopathy and then also have mixed connective tissue? I am not sure but a s l was reading some of the post you can have more then one. And l am not going to let him give me anymore meds. I will just use my compression stocking and continue to take the tramdol like l said before because when some pf the doctors were taking me off the meds. I haven't been falling and my confusion has cleared up. And now l am driving without fear like l was before because of not driving for 2yrs. I have been reading Joseph Prince book Live the let go life and l know you know about that. And now that my sister is going through her issues l told her to read it because she is having some memory issues and shes afraid. Ive been there so l know what's she's going through even though she didn't know what l was going through. And l know it fear you struggle with when your doctors don't listen or have the time to research or talk to their colleagues to learn. You know because you help us all and like you said you have to be you own advocate even though you are paying them and you get no answers. But so far l am getting some doctors who are not afraid to listen and sometimes be wrong and learn from there patients. Its hard to find them butbwhen you find them just hold on to them. Your the greatest and God sees all you do....

Hi Laura, Thanks for sharing. Just wondering why you say Plaquinil are not your friend? I was on it for bout 2 years and feel like it made me worse, especially now after getting off it. While now at the same time, nervous I am not on it, as I hear with MCTD w/lupus type symptoms, I should be. Overall, feeling great without it, but vertigo just decided to settle in the last few days. Curious to your reasoning behind it, though. Thanks again.