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karen33w
@karen33w

Posts: 3
Joined: Dec 12, 2018

Autoimmune encephalitis treatment denied

Posted by @karen33w, Dec 14, 2018

My apologies for the length.
My father has been seen by many doctors in different states for symptoms that include, But are not limited to shuffling “magnetic “gait, decreasing ability for clear speech because of intense stuttering and sometimes inaudible sounds, which to him are words but to listeners are incoherent, weakness leading to atrophy in certain muscle groups, what was once mild cognitive decline and is now rapidly becoming memory loss/dementia, although he is lucid and bright on most occasions. His long term memory is still intact, and recently incontinence and personality change. (Fortunately he’s becoming even more pleasant and relaxed with occasional inhibition). He’s been tested for tick borne illness, heavy metals, poison, Alzheimer’s, NPH, ALS, etc… After many blood panels one that was sent to Mayo Clinic, shows one abnormality. An autoimmune encephalopathy (?). For which his dr wants IV IG. But he wants further testing. He is a retired FDNY Cheif who tended to the toxic “pile” at ground zero. Maybe that has something to do with this mystery. MAYO clinic just denied the request. A different dr Is now focusing again on ALS. In which case I guess we’ll hope for a stem cell treatment. Two years ago he was a sprite athletic intelligent man who’s life was dedicated to saving others and now he is completely reliant on my mother. He seems to be dying. Does anyone hasn’t any suggestions? We are desperate now.

REPLY

My name is Beryl…..I have no helpful suggestions I am afraid but my heart goes out to you ……hopefully someone will come up with an answer that will help your parents out of their dilemma ……I hope in spite of this you can have a Happy Christmas ……Beryl

Hello @karen33w, welcome to Mayo Clinic Connect. Thank you for advocating for your father. I know it must be frustrating not being able to get an appointment. There is another active discussion that I think might be helpful here:

Groups > Autoimmune Diseases > Referral to Mayo declined
https://connect.mayoclinic.org/discussion/referral-to-mayo-declined/

@colleenyoung our Connect Director has some good suggestions and information that she posted in the discussion here:
https://connect.mayoclinic.org/discussion/referral-to-mayo-declined/?pg=1#comment-83055

Did Mayo Clinic give a reason for the denial?

John

Hello John and Thankyou for your reply. No, the person I spoke with on the phone was unable to give a reason. I’m hoping the letter his doctor receives has some has more info.

@beryl

My name is Beryl…..I have no helpful suggestions I am afraid but my heart goes out to you ……hopefully someone will come up with an answer that will help your parents out of their dilemma ……I hope in spite of this you can have a Happy Christmas ……Beryl

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Thankyou for your kind words! Despite this, we’ll have a good Christmas and pray for some answers.

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