@johnbishop John I have been taking Epson salt baths and then I thought it might be my nerves but even at night, especially at night I will be itching. I have sores all over my back and some on my legs. I went to the dermatologist and she gave something and that didn't help. I went to my gp and he gave me something and that didn't help either. And I don't know if it's because my ana is real high. At the Mayo Clinic they ruled out everything but the liver doctor said it was my nervous system and I might just have to deal with it. I think it has to do with the autoimmune encephalitis which he said my ammonia levels can fluctuation but the elevated ammonia levels he said when l was in the hospital and the uh said it was 90. He said that really wasn't that high. So l don't know if it was the medicines they gave me because l am allergic to almost everything. And I might be still taking a medicine l am allergic too. I am suppose to see another rheumontologist I don't know if he can tell me something or not. But I will definitely try what you said but I am really trying to get off these meds because I think that might also be the problem. Thanks John. I been missing hearing from you

Lisa (@techi) -- I am really sorry anyone has to go through this. I hope the rheumatologist finds some answers for you and a treatment that helps. If you are able, can you update us after your next appointment with the rheumatologist?

John

@techi Hi, Lisa. Sorry you are still fighting this. I can suggest a few things, and one or more might work some. First, I believe you are right in suspecting that your high ANA is giving you the right signal. It signals autoimmune somethings, but then the problem becomes signals what? It can signal an autoimmune approach to any disorder you might have. But since itching is almost always a nerve issue, (very rarely a psyche issue, but occasionally a skin issue) that's the place to start. It can be either primary or secondary, inherited or one-off. Smoldering Myeloma?
Now, what autoimmune disorders affect the nerves in such a way that they signal itch when you don't really itch? I can tell you that many protein dyscrasias do, starting with Alzheimers. Even some meds, especially statins, etc. Also, some forms of AI that attack the myelin sheath around the nerves do. Are there any soaps that seem to make it better or worse? I sometimes itch terribly around my head, and get some relief from Grandpa's Pine Tar Soap, distributed from Cincinnati. It has less other chemicals than most Pine Tar Soaps. Makes a great traveler's dandruff shampoo. Sometimes being different from everyone else has advantages, but not when you itch like this.

@oldkart Thank you so much. I was diagnosed with autoimmune encephalitis and encephalopathy I thought it was the same but found out one can affect your liver so it was easier for them to say both. I thought it could be the beginning of dementia but that was ruled out. So now I was told I have the residual of the encephalitis. I never had this kind of itching and I changed shower gel and soap. And I have been using the same laundry detergent since my children were born. So I will see if I can get that soap you recommend. It sound like it worked for you maybe it will do the same for me. I just want to try something before I have to make an appointment with my dermatologist. Thank you so much.

@techi Lisa, if it affects your liver, it should be no surprise that it affects the nerves, and thus your itching. I am not an expert on livers, except for liver and onions. But having the residual of encephalitis, My guess is some of the new meds coming out for autoimmune etc., might deal with this. There are several out in the last month or so. I have not been fortunate enough to get into the trials yet, but Martha Grogan or Angela Dispenzieri(?) at Mayo will have more info, I feel. Or LabRoots.com, etc.

@oldkarl I really think the doctors are having a problem understanding encephalitis, encephalopathy. When I went to the Mayo Clinic I wanted to see Dr.Britton who knows about autoimmune encephalitis but I was already assigned a team and didn't know if you could switch.Are these doctors you are telling me are all doing trials. And are they at the Mayo Clinic. And is it only the Mayo Clinic in Minnesota?. I do know it's an autoimmune disease but they are telling me it comes and goes. And none of the rheumontologist are only saying you have an autoimmune disease but we don't know what and some people have a high ana and not have an autoimmune disease but if you have the symptoms then there is an issue. When I was reading about autoimmune encephalitis they said all your test can come back normal and you still have it. I looked at the autoimmune encephalitis alliance and they also say it's being misdiagnosed or skipped as a diagnosis. But I will definitely check out these doctors. And I do have an appointment with a new rheumontologist and I didn't know if I should see him because I might get the same answer. I don't know why the doctors can't understand if you have a positive hepatitis test and a positive ana theirs an issue.that there is something going on. But that's just part of the medical care.

@techi You said it right, my friend. I have had a half dozen rheumis in my short life, but none of them have been up to what I think is par for rheu.... One did get me started on injected methotrexate, which I credit for keeping me alive to this point. But because you may have a blood disorder, I would suggest one of the cardio-hematologists such as Grogan and Dispenzieri. There are many of them at Minn. And that seems to be where most of the toughest work is done, especially lab work. I think they offer a program where your local doc can send samples to the Mayo Minn lab to assess for autoimmune. AlnylamAct.com will do the same thing, and it is free. I had a bad experience with Mayo-AZ. 4 months, total of about $15,000, and all I got was a note from Mayo-Minn that without further testing they could not determine which mutation(s) I have. There was no one at AZ who even recognized the word. But the rest of your statement is right on. Just take control of your diagnosis problem, and satisfy your own needs. And don't be afraid of Stanford, or Fred Hutchinson, or Sloan Kettering or Boston, or City of Hope.

@johnbishop John I will definitely let you know what happens.