Yeah, it's nuts. I discovered my brain atrophy only after receiving social security and it was in the result of a cat scan I had on my brain during an ER visit two years prior. When I got my disability, the first thing my lawyers did was turn all the records over to me and I have to say that in most cases nearly every doctor lied to me about every test result. The judge in the disability hearing asked me who I was seeing for my heart. Heart? I said. I don't think I have anything wrong with my heart. He just smiled and ruled in my favor. Turns out I had atrophy and other bad labs and stuff. How did any of these docs expect me to get good care when they wouldn't tell me what was wrong? On the brain thing, my primary care doc told me that the diffuse brain atrophy was no big deal, my brain was twenty years older than it should be so at forty I had the brain of a sixty year old. I asked her what caused it and she said lots of things but that they didn't usually see that type of damage in people as young as me. No testing, nothing. My endo thinks its from the hashis, it could be from the hypoxemia I have that they don't know why I have, but may be due to stenosis in my neck or COPD or it could be from the chronic very low temperature of 95 F that I run during sleep and on waking. I run 97 during the day. Or it could be the AI, though I haven't had any myelination problems and I did have a myelogram and nerve conduction studies, which were extremely painful and shouldn't have been. The docs are all puzzled by that but they hurt so bad that I won't let them due it again. I have "increased repetitive potentials" supposedly due to severe chronic pain.
On the red face and liver, one of the signs of cirrhosis is spidering on the face, tiny exposed red blood vessels and red face. This is due to blood backing up in the upper half of the body. It also causes esophageal varices (veins) to swell and burst, gastric reflux, and a swollen upper half of body. I used to think the lupus rash had to be raised, but many say no and now I am having a part of it that is puffed up and looks like a large red flat spot. But it changes so much, getting worse usually, and if my face is puffy all over, its hard to see what I'm pointing out to the docs.
I got some old tests from pain management from my first referral to my first rhuemy (who was a complete idiot incompetent mean nasty horrible person--told me I had nothing at all wrong with me and I was just feeling sorry for my self and lazy, ran no tests--I threatened to report him and later found out from another doctor that he is just a miserable nasty unhappy person who treats other doctors and everyone that way). Anyway, I guess I was having a rough time my ANA was 1:320 speckled and positive reflexive ANA and high absolute count of lymphocytes and hematocrit.
Yeah, isn't it funny how mental illness causes such dramatic physical problems, like my vitiligo and hyperpigment, your heart problems and kidney problems, all kinds of stuff. You know, if we just stopped working ourselves into a hypochondriac tizzy, we could just settle down and be well! NOT!!!!! Once they get you on psych stuff, then its hard to get care. Even my psychiatrist (who was really good) said, most doctors think that mentally ill people can't get physically ill.
I hope you do better too Kristin and make sure you get a second opinion. One shrink told me to downplay my mental issues so that they wouldnt get in the way. When I'm asked why I take a certain medication, I tell them that its due to depression that is a side effect of my other meds. That puts it on them. Maybe they are afraid that the pred, with your hashis will be bad. Because of my endo problems I can't take prednisone in any strong dose, I really really suffer mentally. Other people with hashis and brain problems have had the same issue. I hate taking the pred, I can only handle the lowest dose pack or cortisone or dexamethasone. Have they checked you for hashimotos encephalopathy? I think at one time I had it and that may be were the brain damage came from. Or maybe the AI disease, I don't know much about the neurological except the demyelinating diseases, which I definitely don't have, but I have lots of neuropathy.
Well, sorry so long and take care.
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments