Itching along with autoimmune disease

@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.

see brachiol puritis

@njcarolnjn, Thank you for sharing this suggestion.

I found the following link for itchy skin (Pruritus),
https://www.mayoclinic.org/diseases-conditions/itchy-skin/symptoms-causes/syc-20355006
Rosemary

Try Clotrimazole with Betamethasone. Unreal!

That's about it, the itching only stops if I shower and put meds on the rash.i swear my RA Dr mumbles on purpose. She probably cannot figure out the rash.....I have had it off and on for years. Because it's only on my back and back of my legs I thought it CD be laundry soap. NOT.

If you have not already, I would recommend going to Mayo in Rochester. This place is the most in-depth clinic rated #1 in the world! When shit goes sideways and you have no answers, I recommend getting on a plane to Rochester, MN. They WILL fix you or at least let you know what you have and how to mitigate it. Saved my life from Hodgkin's Lymphoma in 1995 and now just returned last week to be diagnosed with CSS. I am taking a few courses of action that are outside the box a bit, but the lethargy and sleeping are more than anyone can bare. Good luck and safe travels if you make the trek to the REAL MAYO CLINIC! God bless them all and big thanks to them!

I have tried to keep my house up and not let anyone visit when I am having a total sleep pattern going on. I swear when I am going thru a awful tired spell, I CD go to sleep sitting up or leaning on something. But then that can change to a restless sleep.

What is css