Very informative! How can I get a copy of the presentation slides?

Nicely done, sir!

Dr. McKeon, My son goes to Mayo Florida, has ganglionic Achr antibodies at .04, has almost all symptoms of AE except seizures, and can’t get diagnosed at Mayo! He even has T2 intensities on his MRI. His neurologist at Mayo, tells me that they have consulted you (I had asked them to) and said you do not think the g-Achr antibodies are a problem and he should go on depression medicine as they have suggested. I have read many studies that say any g-Achr antibody over .02 is concerning. Apparently this antibody can have something to do with Dysauntomia also but I’ve never heard that from any doctor and as far as I understand it, his symptoms don’t point in that direction. I’ve never heard of anyone with depression with the horrible symptoms that he has suffered with for over a year and he has several blood tests way out of range too. The only explanation I get from his doctors is that “If you do enough blood tests, you’ll find some out of range.” His IGF1 has been very high in 5 separate tests. Since the beginning I have been concerned with the IGF1 causing his many thyroid nodules, I was told by the Mayo Endocrinologist that there was no connection between IGF1 and thyroid nodules.I was told that only concern for his high IGF1 is acromegaly and he doesn’t have that. I know from reading studies in the International Journal of Endocrinology and a few other studies, that there is a definite connection between high IGF1 and thyroid nodules, and IGF1 will also cause cancer to grow faster. His ACE has been high and he has had a cough, that concerned me for Neurosarcoidosis and at my insistence, he did get a chest X-ray that was clear, but again no one is concerned. After my many complaints about him needing real help, without even seeing him again, his neurologist now says she believes he has FND and wants him to spend 4 to 6 weeks in-house at the Mayo hospital to learn how to live with this mysterious FND diagnoses that sort of just came from nowhere. As sick as he has been, he has not seen his neurologist in 6 months even though I’ve asked for him to be reevaluated. Something is terribly wrong here and it’s not depression! He does have many thyroid nodules and possible thyroid cancer, so he will be having his thyroid removed in a few weeks. Many in our family have thyroid issues, me included. He’s 46 and in the beginning of this nightmare, he suddenly had psychosis, then memory and cognitive problems, he can’t even remember how to play guitar, which he taught himself to do when he was a child. He has had tics that come and go, his gait is off, his balance is off, his smell is very dulled, he has ringing in ears and his eyes are weaker. He sometimes stutters, he repeats things he hears, he sticks on certain phrases or words for a few days at a time, saying them at inappropriate times, and he sticks his tongue out in a very stiff way. He knows that he has lost his thinking abilities and now he believes that no one can help him because he has lost so much of who he was and no doctors seem to be able to help him. He will sometimes say, “Mom, you know I am in here! I just can’t explain what is going on in my brain but it’s not working like it used to.” He misses how social he used to be and said he misses talking to everyone and being out among his peers. He does not act depressed, he acts confused. I’m pretty sure that it is autoimmune encephalitis but the doctors at Mayo Florida are so determined that it is depression and they are totally ignoring his real symptoms.

@265dayst

3 жыл бұрын

Please have your son checked for a abnormal cyst in his scrotum.. It confuses the immune system and can be the cause of his symptoms .. Your sons mental health is only a symptom of a biological problem.. antidepressant chemical medicines are not going to help :(

@erindowling8540

3 жыл бұрын

Amina Shaham, Thank you! Mayo did a full body scan, but I have read that’s not good enough to find a cyst in his scotum. I have read that area should be looked at separately and with a different imaging. I asked his doctor at Mayo, but she said they would not do that. She said if anything was there, it would of shown up on the can. It’s my understanding that a regular cyst would not show up on a full body scan. Do you know of any studies you could point me to? Taking out his diseased thyroid made a huge difference in his illness but he still has personality change and emotional dullness.

@265dayst

3 жыл бұрын

Erin Dowling Ask for an ultrasound or MRI and a honest Radiology interpretation of any abnormal masses.. I pray you , your son and family obtain the answers for full healing very soon .. Best to you!

@angirgie729

Жыл бұрын

Im reading this 4 years after you wrote it. How is your son now? Im ask8ng because your story of goung to different doctors and specialist and no one giving you information that coukd help your son and not even seeming concerned is exactly like what I went through with my son now 32 . I am an RN but have been taking care if my son full time for past 10 years. I ended up doung astronomical amounts of research and came up with no less than 10 possible causes of my sons symptoms where the umpteen specialist could find none and just wanted to put him on antipsychotics. The problem is medical doctors really only write prescriptions or send you to a surgeon to get something cut off and those medications and surgeries often dont help and sometimes create new problems. I know your concerned for your son and want him the best he can be. My don would be dead by now if i would have continuef listening to them because they wanted him on antipsychotics which gave him fatty liver, prediabeyes, caused his weight to triple, and that was ALL they had to offer him becsuse they never looked deeper at what was causing his symptoms. Anyway there are much better doctors to go to that truly can get to the bottom of symptoms and actually treat the root causes. It makes me angry to know their are people suffering to this day because of this kind of treatment by medical system. Do they want to help patients or not. It looks like not to me. They can have the best bed side manners and seem to care but the fact is the standard medical education these doxtors received was never intended on curring disease. They badically treat symptoms only. My son no longer has fatty liver, no longer has prediabetes, his weight is back to normal and he still has some concerns but now we have answers and treatments that font harm. I could right a book on everything ive learnef and it would be titled something like how the medical system failed my child and the steps i took to get him the proper care he needed. I left out a whole lot of detail to keep this comment as short as possoble. Love to know how your son is doung now. Hopefully you were able to find a doctor that could help him. 🤔💕

How do we know if the problem in the brain is the cause of Autoimmune Encaphilitis or if the problem is the cause of Delirium (a separate illness) ?. Both conditions seem to have similar symptoms. And I have heard that both can be caused from a brain disfunction. Psychosis and an immediate change in personality seem to be just two of those symtpoms. Is it possible that a person might have Delirium caused from something happening in the brain instead of Autoimmune Encaphilitis. ?

@265dayst

Жыл бұрын

blood cbc test and antibody blood tests - all under $200 private labs- This guy wont tell you the truth

@davidkeel

Жыл бұрын

@@265dayst thanks for the reply.

Dr. Jeffrey Britton the Number One neurologist at Mayo Clinic in Rochester, MN. Have known Dr. Britton since 2003. Brilliant man!!!

@265dayst

Жыл бұрын

great if he is that good sn an honest Neurologist - fire Mkeon and give his patience and his huge pay check to this Neurologist or the other professionals who follow " The law obi-ding code of patient CARE"

Jesus please heal me from this.

@erindowling1129

4 жыл бұрын

D P I hope you have someone to help you navigate if you have this disease. It is not well known in the medical community and therefore hard to find treatment. There are very good Facebook pages that can help direct you to good doctors. I wish I had known about them before I picked Mayo Fl. Online you can find places like the encephalitis society. They can recommend places for you to go. It is helpful to take someone to your appointments with you.

@DP-mj2dw

4 жыл бұрын

@@erindowling1129 did you have treatment? Did they help you

@erindowling1129

4 жыл бұрын

D P it was my grown son that was sick. Mayo Florida did not help him. I replied below in the comments about his story. You have to be very proactive with this disease. Study it from the best online sources. Mayo Rochester has some of the best info but for some reason, it’s not flowing down to Mayo Florida. Try to have someone in your family be your advocate. When you are sick with this, sometimes it’s confusing to figure out the best path and it really helps to have someone that cares about you to go to doctors and help you make decisions. Most hospitals don’t understand or even know about this or about the antibodies. I think looking for those antibodies would be the first test but some people don’t show antibodies and still have autoimmune encephalitis or autoimmune dementia. Your local doctor can order the bloodwork locally and then send it to Mayo Rochester to look for antibodies. I hope you find help.

@DP-mj2dw

4 жыл бұрын

@@erindowling1129 is he ok? Did he get help?

@erindowling1129

4 жыл бұрын

D P He only got help becauseI insisted they remove his diseased thyroid. Mayo did not want to do it but because he had a test that said it could be cancer, they had to take it out if we wanted it out. They fought me on it. My son got much better after that but still is not well. He really needed for them to try the steroids on him after surgery but they refused. They are still saying that it was depression. No one has those symptoms with depression! He was having to live with us for the year before surgery because he couldn’t work and couldn’t remember anything but after surgery he got so much better. The movements disorder went away, he was able to remember how to do things again, it also stopped the speech problems and he could drive again. Almost everything went away except a couple things. He can now live on his own, drive and work but still needs some treatment. This is a treatable disease in most cases but it’s important to have treatment sooner than later.

Practice what you preach sir- You claim to know this condition so well however you misdiagnose this with many patients.. Your many horrible reviews all over the web are correct of your unethical practices- you are not abiding by your "oath " taken in medical school .So glad I did not chose you as my physician! Stay away from this man .. Horrid human .

@265dayst

Жыл бұрын

DO NOT trust this monster from the Mayo Clinic in Rochester Minnesota USA This money hungry man lied and treated me like a piece of garbage while i was experiencing active "attacks on my brain" during a ZOOM medical assesment meeting--July 2020 after I converted to Islam.. (He hates Muslims) He finished his interegative evil toned "Doctor visit" with me by saying he wanted me to fly to Rochester so he could "Get pictures my pelvis and do AnOTHER violating exam of my genitalia as well as visit with a "Spells clinic Witch doctors of some kind " Mayo clinic needs to FIRE this poor excuse of a human Andrew Mkeon before he harms more innocent ptients with acute biological Neurological causes.. He is mot a psyciatrist . He has a seprate lost of ptiens that have acute ailments that he pits on his "Nut Case list" as he calls it. He orderea his nurse staff to pit ceryain patients he cant heal on a "nut list to insult thr patients authentic symptoms and more".. Get rid of the bad apples Mayo--- y'all do good work and sace so many lives every day- DONT let this man SOIL the Mayo climic name with his NON care of patients and their families !!!