Autoimmune encephalopathy anyone?

Posted by tanap1 @tanap1, Tue, Oct 22 5:39pm

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?

Hello @tanap1, I ran across an article that may provide some helpful information for you. Right Diagnosis Leads to Relief From Autoimmune Encephalitis — https://intheloop.mayoclinic.org/2019/03/19/right-diagnosis-leads-to-relief-from-autoimmune-encephalitis/

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@johnbishop

Hello @tanap1, I ran across an article that may provide some helpful information for you. Right Diagnosis Leads to Relief From Autoimmune Encephalitis — https://intheloop.mayoclinic.org/2019/03/19/right-diagnosis-leads-to-relief-from-autoimmune-encephalitis/

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Thank you so much! I will take a look at it. The more informed the better, right? I'm just so hoping to not be dismissed by a new doctor. Unfortunately, I have been by a few.

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@tanap1

Thank you so much! I will take a look at it. The more informed the better, right? I'm just so hoping to not be dismissed by a new doctor. Unfortunately, I have been by a few.

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@tanap1 there is another discussion that you might want to join since you mentioned you have also been diagnosed with Hashimoto Thyroiditis. There are probably more members with similar symptoms in the following discussion.

> Groups > Autoimmune Diseases > Hashimoto's Thyroiditis and IVIG Treatment?*
https://connect.mayoclinic.org/discussion/hashimotos-thyroiditis-and-ivig-treatment/?utm_campaign=search

You are right, information is power so the more you know about your disease you will hopefully be able to find a treatment that helps.

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@tanap1

Thank you so much! I will take a look at it. The more informed the better, right? I'm just so hoping to not be dismissed by a new doctor. Unfortunately, I have been by a few.

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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?)

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@peach414144

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?)

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@peach414144 I am so glad you advocated for yourself AND changed doctors. But, I’m also sad with what the oncologist found. (give yourself a pat on the back) And it’s very helpful to others when you tell your story (maybe not as much detail 😜). You might think of writing a very nice, pleasant letter to your geriatrician explaining the outcome. And you have left her practice because of her manner. The nicer you are, the better you will get your message across. Please let me know what happens healthwise.

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@becsbuddy

@peach414144 I am so glad you advocated for yourself AND changed doctors. But, I’m also sad with what the oncologist found. (give yourself a pat on the back) And it’s very helpful to others when you tell your story (maybe not as much detail 😜). You might think of writing a very nice, pleasant letter to your geriatrician explaining the outcome. And you have left her practice because of her manner. The nicer you are, the better you will get your message across. Please let me know what happens healthwise.

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Hi Becky, Peach here. After this doctor screamed at me I left her office, went home and went onto the Internet to find a new doctor and that same day I changed doctors. That did make me feel somewhat better. I have gone through many tests that confirm the prolapse in all the lower areas. Still do not know what kind of a doctor could help me. It is so difficult not just to stop the body excretions but to be able to pass them is even harder. Quite a difficult way to live. Please, anybody out there, help me, The gynecologist has no answers for me. Would it be my family doctor? Even though I presented this to my gastro doctor he did nothing. Perhaps a different gastro? Or both? Thank you in advance.

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@peach414144

Hi Becky, Peach here. After this doctor screamed at me I left her office, went home and went onto the Internet to find a new doctor and that same day I changed doctors. That did make me feel somewhat better. I have gone through many tests that confirm the prolapse in all the lower areas. Still do not know what kind of a doctor could help me. It is so difficult not just to stop the body excretions but to be able to pass them is even harder. Quite a difficult way to live. Please, anybody out there, help me, The gynecologist has no answers for me. Would it be my family doctor? Even though I presented this to my gastro doctor he did nothing. Perhaps a different gastro? Or both? Thank you in advance.

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Dear Becky, forgot to add. The family doctor put me down so bad she had to be going through a miserable time in her life which stil does not give her the right to not help her patient. Perhaps something could have been done to stop the rest of the ,lower half of my body from descending if she addressed the problem. Has she hurt other patients or was I the only target? She belittled me severely. Do not worry, I am fine now. Even if she was going through a very difficult time in her life she should have thrown herself into her practice and helped her patients instead. Should she continue in her practice? And how could she not have realized the serious problem I was presenting to her? This goes deeper than I originally realized. Becky, you are kind to think of me and I do appreciate and thank you.

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@peach414144 This web site may help you with pelvic organ prolapse. You can get some information and figure out where to go next. https://www.mayoclinic.org/diseases-conditions/pelvic-organ-prolapse/symptoms-causes/syc-20360557. If you have a doctor now, he/she would be the one to ask for a referral. Who asked for the CT scan and read the scan report?

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@becsbuddy

@peach414144 This web site may help you with pelvic organ prolapse. You can get some information and figure out where to go next. https://www.mayoclinic.org/diseases-conditions/pelvic-organ-prolapse/symptoms-causes/syc-20360557. If you have a doctor now, he/she would be the one to ask for a referral. Who asked for the CT scan and read the scan report?

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The doctor who set me up for the scan was an oncologist who I was using for my anemia and she also read it. I did not ask her to do this. I am pretty sure she heard my ex doctor bragging about the stupid patient that she yelled at. thank you and yes I will ask my new doctor to help me with this. There are all knds of people in this world and it includes doctors. I would like to ask her "Are you proud of yourself?"

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@peach414144

The doctor who set me up for the scan was an oncologist who I was using for my anemia and she also read it. I did not ask her to do this. I am pretty sure she heard my ex doctor bragging about the stupid patient that she yelled at. thank you and yes I will ask my new doctor to help me with this. There are all knds of people in this world and it includes doctors. I would like to ask her "Are you proud of yourself?"

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@peach414144 Hi Peach Lioness here good for you in getting rid of that rude person . I would think that a good gyn. is the one you want to see but know this person and trust her . Go to your Dr and ask him My best friend has some prolapse and her gyn gave her a pessorie to wear . I lost track to see if it has helped her or not . You are very kind in acting this way about that person. Maybe she was going through the change but that's still no excuse to act as she did . Let us know how you are doing we all care her

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@lioness

@peach414144 Hi Peach Lioness here good for you in getting rid of that rude person . I would think that a good gyn. is the one you want to see but know this person and trust her . Go to your Dr and ask him My best friend has some prolapse and her gyn gave her a pessorie to wear . I lost track to see if it has helped her or not . You are very kind in acting this way about that person. Maybe she was going through the change but that's still no excuse to act as she did . Let us know how you are doing we all care her

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Dear Lioness: The gyn doctor was no better. He had some tests done and had no way to work with this problem. I asked who else could help. He said nothing. Dead end living here and at age 82 difficult to move. And then again where would it be better? I will not go to an assisted living. I have been there and see it to be "They help you to die faster and not in a nice way." and I will not ever be ready for this. SHAME on these so called doctors. (Still holding on here in Ocala Florida) But for how much longer I don't know. I will have a good day today with a great meal, music and television with Lilli cat and Margarite dog. Force that smile. (Again, I ask these so called doctors: "Are you proud of yourselves"? This is not addressed to the many other great doctors whom we all appreciate.).

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@peach414144

Dear Lioness: The gyn doctor was no better. He had some tests done and had no way to work with this problem. I asked who else could help. He said nothing. Dead end living here and at age 82 difficult to move. And then again where would it be better? I will not go to an assisted living. I have been there and see it to be "They help you to die faster and not in a nice way." and I will not ever be ready for this. SHAME on these so called doctors. (Still holding on here in Ocala Florida) But for how much longer I don't know. I will have a good day today with a great meal, music and television with Lilli cat and Margarite dog. Force that smile. (Again, I ask these so called doctors: "Are you proud of yourselves"? This is not addressed to the many other great doctors whom we all appreciate.).

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@peach414144 I'm so sorry to hear about your situation So many Dr,s don't know what to do for us as we age they should understand that our bodies change We have to do our best for our bodies now .Mine is fibro and back All I do now is keeping in God,s word and looking up ,get pleasure in what you can .God bless you Peach

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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

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@lioness

@peach414144 I'm so sorry to hear about your situation So many Dr,s don't know what to do for us as we age they should understand that our bodies change We have to do our best for our bodies now .Mine is fibro and back All I do now is keeping in God,s word and looking up ,get pleasure in what you can .God bless you Peach

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Yes Lioness you are correct. But I now know that this particular doctor has done this to others. How did she get her degrees? To me she sounds like a mental case or just a very hurtful person and enjoys it immensly. There is a spychiatric label for a person such as this. But then again I am still in Ocala. (Pardon my spelling as this is an I don't care that much today. ) I do like and care for Ocala but is it true that many of the rejects come here? My clue to them is: Do not hurt your patients, just send them off with a smile and prescriptions. Ocala is a beautiful place to live and I do enjoy Ocala.

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@peach414144

Yes Lioness you are correct. But I now know that this particular doctor has done this to others. How did she get her degrees? To me she sounds like a mental case or just a very hurtful person and enjoys it immensly. There is a spychiatric label for a person such as this. But then again I am still in Ocala. (Pardon my spelling as this is an I don't care that much today. ) I do like and care for Ocala but is it true that many of the rejects come here? My clue to them is: Do not hurt your patients, just send them off with a smile and prescriptions. Ocala is a beautiful place to live and I do enjoy Ocala.

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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

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