Autoimmune encephalopathy anyone?
Searching for a diagnosis!!! I am looking for others who may be having similar experiences as I am. I have been diagnosed with Hashimoto Thyroiditis for many many years now. I take levothyroxine, which seems to keep my thyroid in check. However, about 5 years ago I began having neurological symptoms; gait issues, off and on memory loss, concentration issues, tremors, seizure like episodes, stroke like symptoms, severe muscle cramping (dystonia?), word finding problems….the list goes on and on. These symptoms come and go, usually made worse by stress or being tired. All diagnostic tests I have had come back normal, eeg, emg, blood work including various antibody screenings, MRI's, cardio sonograms, EXCEPT for low but normal memory screening and very high TPO and TGab levels. I was given 1 5-day treatment of IV 1000 mg Solu-medrol which turned me into a brand new person!!! I felt great for several months but my symptoms are returning now. My current Neurologist has now referred me to a Neuro immunologist. This will be my 5th Neurologist in 5 years!! I am so nervous that I will be dismissed after I actually had something work for me. I have been dismissed by many many drs through this. All the things I have learned seem to point to Hashimoto Encephalopathy, HE, SREAT, AE….whatever you want to call it. BUT I have found many people in the medical field don't believe in this diagnosis! Any help, pointers, suggestions, or support out there? Is there anyone experiencing similar things?
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Dear Tapap: Do not feel bad. I was also dismissed by a doctor: LISTEN TO THIS: Went to my new geriatric doctor complaining of severe constipation, diarear, never- ending gas, severe pains, etc., etc.,. After she SCREAMED at me for at lease fifteen minutes beliteling me (so loud that the people in the waiting room heard this) and putting me down I said nothing and went home to change doctors. At age eighty two I should know my body. Well, now here comes the kicker: While seeing the oncologist for my severe anemia (low white cells and others) about four months later I was told to have a cat scan with drinking a solution that would show the lower area of the body.) I did so and the results: My entire lower half of the body has prolapsed downwards with large areas of (forgetting the medical terminology) of mass. on and on. So shame on the doctor who allowed my body to become more damaged. Do you think she was going through change of life She was the right age for this?) I will be kind (I have not forgiven her as yet. Still working on this.) Would love to place her name here but I guess I am still working on being too kind. I think this doctor was bragging to some of her doctor friends and it got back to my new doctor who had me take the cat scan. SO…SEE…There was this first doctor and then there was THIS WONDERFUL, GREAT AND GOOD DOCTOR. God bless her. (Last thought: Is she still doing this to other patients? Should this be reported?)
Peach, I am so sorry you had such an awful experience with your dr. I actually had my primary dr roll her eyes at me when I informed her my neurologist was referring me to the Mayo Clinic a year ago. I just about cried right there in the office. I definitely am in the market for a new primary. For now, I only use her office for routine blood work which I have about every 6 mos. Once I find someone I feel may care a bit, I will switch. Most of my medical concerns are being treated by specialists right now. Once I decide to FIRE her as my dr, she will probably be thrilled. I doubt she enjoys me as her patient as equally as I don't like her as my dr. (the eye roll kind of brought that idea home for me) Regardless, there is no excuse for poor care. We know our own bodies better than anyone, even Drs!! We deserve good medical care. Keep pushing for your own good health!! I'm going to! We owe that to ourselves. 8 )
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@quiteachiver75
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YES I AGREE WITH EVERYTHING. I HAD A EXCELLENT GP SHE GAVE UP TO STUDY ANOTHER I MISS HER,STRUGGLING TO FIND ANOTHER YOU CAN TALK TO. NUMBER 3 COMING UP
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Becky, Volunteer Mentor
@becsbuddy
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Thank you so much, Becky! I am glad you have finally received a diagnosis and hope you are getting helpful treatment. I actually am going through a university medical center. I have found the most help by going to Dr.s within the same network. At least, within the same network, each Dr has access to information from other Dr.s. They may not all agree with each other but is seems to lessen multiple repeat testing and things of that nature. In my situation, it seems the process of elimination is a huge part of finding a diagnosis. I am trying to remain hopeful the neuro immunologist will have some answers for me.
@tanap1 I’m wondering if the doctors you see at the medical center might know of some good primary care doctors. Or the hospital in your area might have a list of names, also. Have you tried that?
valm
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Hello! I was diagnosed with Autoimmune Limbic Encephalitis in Dec 2017. I started with faciobrachial dystonic seizures – my left arm and left face twitched. In 2 days it progressed to other types of seizures because the antibodies were attacking my brain. If you use facebook, please join the International Autoimmune Encephalitis Society page as the people are very helpful. If you don’t you can still get lots of info on their website with the same name. Different types of encephalitis affects different parts of the brain. Also keep in mind that there’s also Hashimotos encephalitits And I’m not sure if that’s the same as what you’ve been diagnosed with.
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peach414144
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@peach414144 Beautiful Ocala right where is it located anyhow ?Is it near the ocean? I've vacationed in FLA but can't remember where it's at
Hi Lioness, yes Ocala is about two hours travel north by car from Orlando (Disney Land) It is in the middle of the peninsula. Not close to the Atlantic ocean nor the gulf of Mexico. Very slight rolling hills (not flat land). The population density is growing quite fast. Much building being done. Seven gas stations opened in one month. (Five Wa Wa's and two Race Track gas stations.) More gas stations still opening. We have a small winter here for a few months but no snow or ice. Ocala is known for it's beautiful huge oak trees as well as the Florida trees. We are landlocked but have many lakes. (But still more women than men). We have many, many oldsters here. For now, peach
peach414144
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Peach, I am so sorry you had such an awful experience with your dr. I actually had my primary dr roll her eyes at me when I informed her my neurologist was referring me to the Mayo Clinic a year ago. I just about cried right there in the office. I definitely am in the market for a new primary. For now, I only use her office for routine blood work which I have about every 6 mos. Once I find someone I feel may care a bit, I will switch. Most of my medical concerns are being treated by specialists right now. Once I decide to FIRE her as my dr, she will probably be thrilled. I doubt she enjoys me as her patient as equally as I don't like her as my dr. (the eye roll kind of brought that idea home for me) Regardless, there is no excuse for poor care. We know our own bodies better than anyone, even Drs!! We deserve good medical care. Keep pushing for your own good health!! I'm going to! We owe that to ourselves. 8 )
Dear Tanap1 yes, i agree. this is peach. We know doctors are still just people like us. But we deserve respect from the doctors just as we give them respect. I think they are overwhelmed with the amount of patients they need to see to follow the guidelines of the businesses that OWN them. But that does not give them the right to disrespect any patient. Oh well, just another day here on Earth. Peach
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lioness
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Hi Lioness, yes Ocala is about two hours travel north by car from Orlando (Disney Land) It is in the middle of the peninsula. Not close to the Atlantic ocean nor the gulf of Mexico. Very slight rolling hills (not flat land). The population density is growing quite fast. Much building being done. Seven gas stations opened in one month. (Five Wa Wa's and two Race Track gas stations.) More gas stations still opening. We have a small winter here for a few months but no snow or ice. Ocala is known for it's beautiful huge oak trees as well as the Florida trees. We are landlocked but have many lakes. (But still more women than men). We have many, many oldsters here. For now, peach
@peach414144 Sounds lovely . In Pa. we had no oceans close to me I lived in the Pittsburg area but went to Oceanside Md a lot . Pretty area.
I also had a difficult time getting diagnosed @tanap1 . I’m glad you’re seeing an neurologist immunologist. They knew right away what was going on with me. Take good articles with you and advocate for yourself! Go to a university medical center, if you can. Please let me know how things turn out for you
Never heard of neurologist immunologist. How do you find one? I'm in Los Angeles California and on Medicare HMO.
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Becky, Volunteer Mentor
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Never heard of neurologist immunologist. How do you find one? I'm in Los Angeles California and on Medicare HMO.
@american I go to University of Colorado Hospital. The neurology department has a group of doctors who focus on inflammatory problems in the brain (like MS) They are neuro-immunologists. Luckily for me, they had heard of Clippers disease but I was their first patient because it’s rare
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@tanap1 I’m wondering if the doctors you see at the medical center might know of some good primary care doctors. Or the hospital in your area might have a list of names, also. Have you tried that?
@becsbuddy That is a good plan. I am hoping to find a Dr that will believe in my diagnosis. It seems hard to find Drs out there that take some autoimmune illnesses very seriously! I was thinking the same, find a Dr that is in the same network system as my specialists.
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Never heard of neurologist immunologist. How do you find one? I'm in Los Angeles California and on Medicare HMO.
@american Like Becky, I also go to a university hospital. I am in the Kansas City area and go to KU Med. (Kansas University) My referring Neurologist also called the neuro-immunologist an "autoimmune neurologist"
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Hello! I was diagnosed with Autoimmune Limbic Encephalitis in Dec 2017. I started with faciobrachial dystonic seizures – my left arm and left face twitched. In 2 days it progressed to other types of seizures because the antibodies were attacking my brain. If you use facebook, please join the International Autoimmune Encephalitis Society page as the people are very helpful. If you don’t you can still get lots of info on their website with the same name. Different types of encephalitis affects different parts of the brain. Also keep in mind that there’s also Hashimotos encephalitits And I’m not sure if that’s the same as what you’ve been diagnosed with.
@valm Thanks! I have requested to join the International Autoimmune Encephalitis Society. I currently follow the Autoimmune Encephalitis Alliance, Understanding Hashimoto's Encephalopathy, and HESA which are also on facebook. Although I haven't been medically "coded" with a diagnosis of Hashimoto's Encephalitis, I am currently being treated as if that is what I have. I have no other autoimmune markers except for very high TPO and TGab levels. I responded very well to high dose IV steroids so hopefully I am on the right track! The steroid treatments have "worn off." I hope I find good answers with the neuro-immunologist. What types of Drs do you see for your care?
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Lisa
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@tapan1 l also been diagnosed with HE. It was first viral encephalitis in 1997. And it was very hard and scary. I was at work a normal day and than next thing l know l was sick. My fever was 104 and l went to the doctor he said it was the flu and sent me home. I knew that didn't seem right an adult with a 104 temp, you just don't send home. But it was a new general practice doctor. Then the next day my husband said he took me back. I was not with it. And the straight thing is when you are confused and you can't remember. But Thank God my family took me to the hospital l worked at. Because they wouldn't send me home. They knew the type of person l was. Very happy and very upbeat so this was out of the ordinary. So the hurried and called the neurologist in. I was placed in ICU. For how long don't know. They said lots of people came and several pastors from the church. There was 2 senior pastors who came. One was like a dad to me. And he told the medical staff l will be out the next day. And Praise God that was tha answer to Pray. I was out. And people came to visit and my family but l don't remember any of it because it like l was in a subconscious state. They send me to another hospital for rehab but l don't even remember being transferred. My family told me they got me upto to walk around but l don't remember that either. It was around the time Princess Diana died because l remember crying. But l did very well in rehab. And in 2017 God gave me my memory back. And l was in so many meds. Now Praise God l no longer on antidepressants, seizure meds, some pain killers. I use to fall all the time. And l haven't fell in over 6months. And l couldn't cook or clean but l can do that and l wasn't able to keep my grandkids without someone around and l keep my grandson every week. And also God has blessed me with keeping some grandchildren who adopted me as grandma. And l can drive again so God can do miraculous healing if you only trust him. Be blessed
REPLY
@tanap1
Thank you so much, Becky! I am glad you have finally received a diagnosis and hope you are getting helpful treatment. I actually am going through a university medical center. I have found the most help by going to Dr.s within the same network. At least, within the same network, each Dr has access to information from other Dr.s. They may not all agree with each other but is seems to lessen multiple repeat testing and things of that nature. In my situation, it seems the process of elimination is a huge part of finding a diagnosis. I am trying to remain hopeful the neuro immunologist will have some answers for me.
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