International Patient Advocate:
Beverly J. SeminaraLINKS:
H.E. LINKS - ARTICLE, FAQ's and THYROID DISEASE INFORMATION
|Hashimoto's Encephalopathy - A Complete List of Published Case Studies|
|The First and Only Complete List of Published Case Studies Concerning Hashimoto's Encephalopathy - H.E.
2. Enter your user id and password.
3. Click on the "EDIT" button for this section.
4. Scroll past the picture to the text box.
5. Type something in the text box in front of these instructions, pushing the instructions ahead. Click "Save Changes." Your stuff is on your page. Congratulations: you're officially a webmaster! Now you can return to your edit screen and erase these instructions. Edit every section of your OrgSite just as you did here.
|EVOLUTION OF HASHIMOTO'S ENCEPHALOPATHY CASE STUDIES |
THE BLUE MARBLE: This image originally came from a NASA website. All works created by NASA are in the public domain, with the exception of the usage-restricted NASA logo. Works created by the U.S. federal government cannot be copyrighted. Wikipedia The Free Encyclopedia
I was curious about the sudden increase of published Case Studies regarding the Diagnosis and Treatment of Hashimoto's Encephalopathy. Especially since I found nothing additional on H.E. anywhere from 1996 to 2001. Very few appeared in 2002. There was an amazing explosion of published Case Studies on the Internet from mid 2003 to the Present. This corresponded with the multitude of emails I would continue to receive from people being Diagnosed and Treated for H.E., as well as the number of people joing HELPS.
What I found was quite interesting.
I began to break down the total figure of published Case Studies by the Decade. I was also curious about which Countries were consistently publishing. Soon I found my list no longer being broken down into Decades, but into Years within a Decade. Then to Months within a Year.
I was amazed at the escalation. This is what I discovered:
NOTE: On July 3, 1996 I was correctly diagnosed by Dr. Kenneth Heilman, Director of Neurology, Shands, University of Florida-Gainesville, Florida USA
NOTE: Listed below are the Countries published by the Month within the Year. Several were published by the same Country within the same Month.
MONTHS WITHIN 2000
Countries by Month:
Countries: Germany, Greece, Ireland
Hashimoto's Encephalopathy was a Topic at:
Countries: Belgium, India, Australia, France, Germany, United Kingdom, Mayo Clinic-Rochester, Minnesota USA, Vanderbilt University-Nashville, Tennessee USA, Brigham and Women's Hospital and Harvard Medical School-Boston, Massachusetts USA, University of Massachusetts Medical School-Worcester, Massachusetts USA, University of North Carolina-Chapel Hill, North Carolina USA
Hashimoto's Encephalopathy was a Topic at:
The 4th Congress of the European Pediatric Neurological Society
Countries: Spain, Germany, Italy, France, Belgium, Greece, Japan, Mayo Clinic-Rochester, Minnesota USA, Massachusetts General Hospital and Harvard Medical School-Boston, Massachusetts USA, Walter Reed Army Medical Center-Washington D.C. USA
Countries: Norway, South Korea, Austria, Italy, Greece, Scotland, France, United Kingdom, The Netherlands, Germany, Japan, Mayo Clinic-Rochester, Minnesota USA, Columbia University and Brigham and Women's Hospital and Harvard Medical School-Boston, Massachusetts USA
Countries: Israel, India, Scotland, South Korea, Spain, Italy, Poland, Germany, Japan, Belgium, United Kingdom, Mayo Clinic-Jacksonville, Florida USA, Mayo Clinic-Rochester, Minnesota USA, Metro Health Medical Center-Cleveland, Ohio USA
Countries: Argentina, Taiwan, Japan, Germany, Ireland, United Kingdom, Hong Kong, John Hopkins University School of Medicine-Baltimore, Maryland USA, The Cleveland Clinic-Cleveland, Ohio USA, Mayo Clinic-Rochester, Minnesota USA
April, 2005 - "Hashimoto's Encephalopathy - A Complete List of Published Case Studies" by Beverly J. Seminara, Hashimoto's Encephalopathy International Patient Advocate is published on the Internet.
IN 20 YEARS (1960's - 1980's) 8 Case Studies were published
The United Kingdom and France.
IN 10 YEARS (1990's) INCREDIBLY 43 Case Studies were published
European, Mediterranean Countries and Japan dominate the amount of Case Studies published.
1993 Russia publishes
IN 2000 - 20 Case Studies were published
European, Mediterranean Countries and Japan again dominate the amount of Case Studies published.
My Articles: "Hashimoto's Encephalopathy: A Neuroendocrine Disorder," and "Hashimoto's Encephalopathy - Frequently Asked Questions," were published on the Internet - as was my Web Site and Support Group HELPS
Turkey publishes. First Middle Eastern Country
Hashimoto's Encephalopathy was a Topic at:
IN 2001 - 18 Case Studies were published
European Countries still dominate.
Australia publishes again
Hashimoto's Encephalopathy was a Topic at THREE Medical Conferences:
The 4th Congress of the European Pediatric Neurological Society
IN 2002 - 25 Case Studies were published
Again European, Mediterranean Countries and Japan dominate.
Mayo Clinic, Rochester-Minnesota USA publishes
IN 2003 - 26 Case Studies were published
European, Mediterranean Countries and Japan continue to dominate.
South Korea publishes
IN 2004 - 24 Case Studies were published
European, Mediterranean Countries and Japan continue to dominate.
IN 2005 - 12 Case Studies are published
Taiwan publishes for the first time
April, 2005 - "Hashimoto's Encephalopathy - A Complete List of Published Case Studies" by Beverly J. Seminara, Hashimoto's Encephalopathy International Patient Advocate is published on the Internet.
European, Mediterranean Countries and Japan dominate documenting and publishing Diagnosed Hashimoto's Encephalopathy Patients and courses of Treatment.
USA first publishes about Hashimoto's Encephalopathy in 1995. Shands, University of Florida, Gainesville-Florida.
BIOGRAPHY - DR. HAKARU HASHIMOTO
TITLE: “Hashimoto’s Disease and Dr. Hakaru Hashimoto”
AUTHORS: AMINO N.; Tada H.; Hidaka Y.; Hashimoto K
Department of Laboratory Medicine Osaka University Graduate School of Medicine Japan.
MEDICAL JOURNAL: Endocrinology Journal, 2002 Aug;49(4):393-7
BIOGRAPHY - DR. HAKARU HASHIMOTO
TITLE: “The Heritage of Dr. Hakaru Hashimoto (1881-1934)"
AUTHOR: SAWIN, C. T.
Office of the Medical Inspector The Veterans Health Administration Washington, D.C., USA
MEDICAL JOURNAL: Biography and Historical Article: Endocrinology Journal, 2002 Aug;49(4):399-403
I am ONE person, WITH H.E., writing, collecting data, researching scientific studies, answering literally thousands of emails about Hashimoto's Encephalopathy. There is no one to assist me with this enormous task. I do it all with no assistance, no funding and on my limited income. And I have H.E.
What use to take me 30 minutes to accomplish before H.E, now takes me 3 hours. It takes an enormous amount of effort for me to do simple tasks. I remember how I was before H.E. What I would do naturally, without even thinking - now, consumes every ounce of energy I have. I am very much aware of how difficult a simple task can be for me. I know the task is not complicated. I know it is easy. I am very much aware of why it is so difficult for me. Aware of the fact, that I cannot do anything about it while it is happening. Yet that does not stop me from pushing myself harder.
I endured my stroke-like H.E. Symptoms, the loss of my career, and income - ALONE. The numerous and so often invasive Neurological Tests and endless doctor appointments, the horrific death sentence misdiagnoses - ALONE. My Treatment for H.E. with all the terrible side effects, including some of the most rare - ALONE. I was also the sole caretaker for my Mom. I did it all - ALONE.
Not a soul to help me. Not a soul to give me any emotional support. No one to hold me if I cried. No one to accompany me to the seemingly unending Neurological Tests. No one to go with me. No one there when I came home from the appointment with Neurologist Number 3 after receiving a misdiagnosis of Alzheimer's Disease. No one there for my 'final misdiagnosis' of "Primary Progressive Aphasia of Unknown Etiology." His instructions were: "Get your affairs in order. You will be in a nursing home in 6 months."
It was just Mom and I. Looking after her was my responsibility. No matter how bad my right sided partial paralysis was - the cane I walked with for three years was invisible to her. No matter how bad my speech was, how unintelligible I would become - there was nothing wrong with me. Afterall, I was the strong one. I was the 'doer.'
I was ALONE during the episodes of head to toe Myoclonus, having less than 10 seconds to get on the floor and away from any furniture. I would lay on the floor for 30-40 minutes, my body thrashing about as if 50,000 volts of electricity was surging through it. All the while conscious, alert, aware and - ALONE.
I would recognize the piece of paper in my hand - my electric bill, yet I wasn't sure what I was suppose to do with it. I knew, but wasn't sure. You are aware that you should know what to do, you know you have seen this same bill, you recognize the layout of it. You know you have seen it every month for years. You are aware that it is very familiar. A terrible thing to feel, to be so AWARE.
Trying to write my name, in what was now a child-like scrawl, would take me a half hour. Beads of sweat on my forehead dripping down into my eyes, because this 'simple task' required an enormous amount of effort and concentration. Just trying to write - My Name. But bills had to be paid, groceries had to be bought and taken up two flights of stairs to Mom's condo, then up two flights of stairs to mine. Errands still had to be done.
I still had to drive my car with no feeling on my right side. I could feel the pressure of the gas pedal, I could still read the speedometer, I could brake flawlessly with my left leg and foot. I drove myself to and from doctor appointments and MRI's, and SPECT Scans, and CT Scans over and over again. When I had the Angiogram of my Brain, I took a taxi at 5:00 a.m. to the Hospital, knowing how high risk and how dangerous this test could be - ALONE. I still had RESPONSIBILITIES and there were NO OPTIONS. I did it all, everything - ALONE.
I knew Mom and I could no longer each have our own place - the income was no longer there. It became necessary to move in together into another place away from where all this started.
Before Treatment and after a CORRECT Diagnosis, WITH MY H.E. Symptoms, I had to sell two condominiums and buy a new place for Mom and I 50 miles north of where we had lived for 11 years. Contact movers for quotes. Decide which was best. Have my beloved pet of 25 years put to sleep, and mourn the loss of such a trusted friend - alone. Pack two condos, Mom's and mine. Sign mortgage closing papers. The entire time, barely able to scrawl my name on a piece of paper. Using every amount of strength I had and incredibly, strength I never knew I had.
I had to figure out the new budget to see if we could survive on it. Contact and set up the utilities for our new place. Continue to grocery shop, prepare all the meals.
In an area that was unfamiliar, I had to find a new Dentist, Gynecologist and an Endocrinologist for my Hypothyroidism. All the time my speech so bad, the paralysis to the point I would drag my right leg along like dead weight. The unbearable fatigue starting at noon and it was downhill from there. I did it. I did it all. Because I had to, there were no options. None.
My Hashimoto's Encephalopathy affected and affects (past and present tense) my Concentration; Attention Span; Comprehension; Ability to Focus; my Stamina and Physicial Strength. I have Dyscalculia - my higher math functions affected and Dysgraphia - my handwriting affected. Multi-tasking is a thing of the past. I do one thing at a time, unable to do two things at a time. I kept and still keep researching H.E. online. I continue pushing myself harder and harder.
Before my correct diagnosis by Dr. Heilman and before Neurologist Number 3, there was Neurologist Number 2. He gave me a ludicris misdiagnosis of: "Conversion Disorder." According to him, my physical problems were due to two things. 1) I was: "A hysterical woman trying to cheat the system." How sexist I thought! I was never hysterical. Frightened, yes. Terrified, yes. Hysterical? No. I was terrified about what was happening to me, and trusted him for answers. In no way, shape or form was I "hysterical." Plus, why would I want to be "Disabled" and live on less than 1/3 of my income? Especially when I had the 'Brass Ring' of my career within my grasp.
He told me my speech was affected because: 2) I was: "Repressing memories of your father putting his penis into your mouth as a child, therefore, due to these repressed memories you have manifested it into your speech problem."
That was an incredibly absurd statement to make. When I heard that from Neurologist Number 2, I intentionally leaned forward in my chair, over his desk and yes, into his 'space.' In order to say: "You know what Sigmond Freud said? Sometimes a cigar is just a cigar." I swear I saw smoke come out of his ears. I guess he was furious at me for accurately quoting Freud.
Neurologist Number 3, the same Neurologist who Misdiagnosed me with: Wilson's Disease (Juvenile Dementia from too much Copper in the body,); Creutzfeldt-Jakob Disease; Alzheimer's Disease; then finally the last Death Sentence Misdiagnosis: "Primary Progressive Aphasia of Unknown Etiology. Get your affairs in order. You will be in a nursing home in 6 months." He now had a CORRECT DIAGNOSIS and a CASE STUDY on Hashimoto's Encephalopathy from Dr. Kenneth Heilman, Director of Neurology at Shands.
Neurologist Number 3 decided not to pursue what the Case Study clearly indicated as the TREATMENT for this disease. Instead he opted to "MONITOR" me, from 1996 to 1998. Two long years. During those two years my condition continued to deteriorate rapidly.
I refer to receiving my CORRECT Diagnosis of H.E. as "a most incredible quirk of fate." To this day, when I think about HOW I got to Shands it just blows me away.
It was April 1996, three months before my CORRECT Diagnosis. I had just received my final horrific misdiagnosis from Neurologist Number 3 of: "Primary Progressive Aphasia of Unknown Etiology. Get your affairs in order. You will be in a nursing home in 6 months." Alone, I returned home. Hearing those words over and over in my head. I had a 'gut feeling' since Day One of my H.E. that all the Physicians, Neurologists and other Specialists I had seen within this terrible year were wrong about their diagnoses and observations. This 'gut feeling' turned out to be correct.
I sat at the table where I had books spread out from The American Medical Association Family Medical Guide and The American Medical Association Home Medical Encyclopedia. Papers all over the table, notes scrawled in my now child-like handwriting. I flipped to the back of one of these books, the very back. I was not looking for anything in particular. I cannot even tell you why I opened it to the very last pages. When I flipped it open, I saw a list of various medical associations sorted by diseases, chronic illnesses and research centers. I cannot tell you WHY, but my eyes found on that page the Aphasia Research Center in Boston, Massachusetts.
To this day, I do not know why on a Tuesday in April, at preciously 2:00 p.m., on a pure spur of the moment decision, I picked up the phone and called the Aphasia Research Center in Boston. I remember thinking that perhaps they were conducting Clinical Studies for patients diagnosed with Aphasia. That perhaps, I could go there and maybe, just maybe, I would not end up in a nursing home in 6 months.
I already knew what Aphasia was - I had looked it up in the American Medical Association books. It explained my Speech. Explained why I sounded like "Elmer Fudd." Why I could not pronounce the letters "L," "F" or "V." But Aphasia kept referring to Stroke Patients. I did not have a Stroke. I knew what "Progressive" meant. Knew what "Primary" meant. Knew what "Aphasia" meant. Knew what "Etiology" meant. This was a year after H.E. presented. A year of endless invasive Neuroloical Tests. The absurd misdiagnosis from Neurologist Number 2. And now, my "Final" diagnosis from Neurologist Number 3. I had not been to Shands yet, had not met Dr. Heilman yet for my CORRECT diagnosis of Hashimoto's Encephalopathy.
I dialed the phone number of the Aphasia Research Center in Boston. Fully expecting a secretary to answer. I was going to request any literature they had on Aphasia. When the phone rang, a man answered with a gruff "Hello." I knew I dialed the number correctly. In my best "Elmer Fudd" I said I was calling long distance from Florida. That I was diagnosed with "Primary Progressive Aphasia of Unknown Etiology," and if he could send me any and all literature about the Aphasia Research Center.
This 'man' who answered the phone spoke with me for an hour. He asked me many questions about my symptoms, etc. What did I have to lose? I told him everything he wanted to know. The entire time wondering why was he so interested in this woman calling from 1,700 miles away, just requesting information about the Center.
Towards the end of that hour conversation, hour of questions, this 'man' said to me: "You do not have Primary Progressive Aphasia. You need to go to Shands at the University of Gainesville there. You need to see the Director of Neurology there, Dr. Kenneth Heilman. It will take you three months to get in. You will need a referral from your Neurologist. Tell him you want another opinion. See Dr. Heilman. Do this immediately." I said: "I will. Thank you. By the way, DOCTOR, WHO ARE YOU?" He could have been the janitor for all I knew. He said: "My name is Dr. Goodglass." I thanked him again, and hung up. What a very strange phone conversation. What a incredible thing for a strange man to tell me. And WHO was Dr. Goodglass anyway? I had no idea.
I immediately did what this man on the phone told me to do. This man on the phone, from 1,700 miles away. Don't ask me why. Because I truly do not know. I felt like it was EXACTLY what I was suppose to do. What I HAD to do. No questions asked. No doubt in my mind. I have no way of explaining it. I immediately contacted Neurologist Number 3 the next morning. Told him I wanted to go to Shands in Gainesville for another opinion. Never telling him about this most odd phone conversation. He gave me the referral I needed.
On July 3, 1996 Dr. Kenneth Heilman, Director of Neurology at Shands Hospital, University of Florida, in Gainesville, correctly diagnosed me in just 5 hours. One year after onset of H.E.
I contacted Shands, and Dr. Heilman's office for an appointment. Never saying who recommended that I see him. One of the math professors from the College where I use to work, was kind enough to drive me the 5 hours to Gainesville. She had graduated from the University of Florida and knew the area. When we arrived and checked in, I met Dr. Kenneth Heilman. He and about a dozen medical students spent the entire day just on me. Not one test was done. Not one vial of blood drawn. I brought literally an armful of every film of every MRI, CT Scan, SPECT Scan, Angiogram of my Brain. I brought every Laboratory Test Result I had. I brought every Physician Note I had. I brought every page of every Medical Record from all the Specialists and Neurologists I had seen in the past year. All of my "Extensive Neurological Tests" were normal.
Five hours after checking in, Dr. Heilman and Dr. Doty entered the room. They told me that I did not have "Primary Progressive Aphasia." I did not have "Alzheimer's Disease." I had Hashimoto's Encephalopathy. Tears of joy streamed down my cheeks. Dr. Heilman said Hashimoto's Encephalopathy was TREATABLE. It was not Curable, but it was TREATABLE. The most amazing word to hear was: TREATABLE. When he asked me if I had any questions, I said yes. I asked him: "Will I have a normal life span?" He smiled when he said: "Yes, you will."
It was then that I told him how I got to Shands. I told him about that phone call I made on such a spur of the moment, that Tuesday afternoon in April. How some strange man answered with a gruff "Hello." How he spoke with me for an hour. Dr. Heilman listened carefully to my story. When I told him I had no idea WHO this Dr. Goodglass was, it caused him to break out into such a belly laugh. A laugh that came from the bottom of his toes. I just sat there wondering why would this name cause him such uncontrollable laughter?
He said to me: "Beverly, do you have any idea WHO Dr. Goodglass is? He is not the United States' authority on Aphasia, he is the WORLD'S AUTHORITY ON APHASIA! No one can talk to Dr. Goodglass. You have to go through 10 people to get to him. Beverly, even I CANNOT call and speak directly to Dr. Goodglass!" He just kept laughing and smiling, shaking his head in disbelief. I sat there stunned.
Days later I thought again about the call I had made on that Tuesday in April. All I could think of was - What were the chances of me calling on that specific day, at that specific time? What were the chances of Dr. Goodglass himself answering the phone? What if I had called 30 minutes later, or on Wednesday instead of Tuesday. What were the chances that I would make that call, on such a spur of the moment? What were the chances that I would speak with such a renowned individual? That he would take the TIME to speak to me, on the phone! That he would tell me that I did NOT have "Primary Progressive Aphasia." That he would tell me to go to Shands and see the Director of Neurology, Dr. Kenneth Heilman.
To this day, it still makes the hair rise on the back of my neck. To this day, I am still amazed how these sequence of events occurred. Especially the mystery of learning WHO Dr. Goodglass is. That is why I refer to my CORRECT Diagnosis as an "A Most Incredible Quirk of Fate."
Dr. Kenneth Heilman sent his findings and a Case Study outlining Treatment for H.E. to the only Neurologist I had, Neurologist Number 3. This was July 3, 1996.
I knew how important it was for a Physician to know a Patient's entire medical history. My new Endocrinologist knew I was alone and the sole caretaker for my Mom. He could see the "Big Picture." Knew there was way too much on my plate. He knew all of the details of what happened to me when H.E. Presented in September 1995, and everything I had endured. The endless invasive Neurological Tests, the horrific Misdiagnoses, at last receiving a CORRECT Diagnosis. And the decision made by Neurologist Number 3 in July, 1996 to "Monitor" me, instead of Treating me.
I would give my new Endocrinlogist every Case Study I had and could find on H.E. He had never heard of H.E. For two years, he watched me deterioate in front of his eyes. He knew by the Case Studies what Treatment was necessary. In November 1998 Treatment for my H.E. was initiated, implemented and totally overseen, by my Endocrinologist. He took over and literally saved my life.
He followed the detailed outline in a Case Study for High Pulse IV Steroid Treatment. He knew all of the side effects I would endure - even some of the rarest side effects were no surprise. He told me what to expect, that it was going to be a long and rough road. I had NO FEAR. I said: "Let's do it." I was in the Hospital for 4 days. Every day while in the Hospital, in one hour I would receive a bag of Methylprednilisone. It was smaller than a bag of chips from a vending machine. I was discharged on 96 milligrams of Medrol (Methylprednilisone) daily. The Long Road of Treatment began. I said goodbye to Neurologist Number 3.
During my Treatment, my Endocrinologist took care of me. From the horrible side effects of the medication, the long and slow wean down from 96 milligrams a day, to the point where we both knew I HAD to Relapse in order for us to find out how many milligrams kept me stable. There was no way of knowing. Everyone is different. Once I Relapsed, we bumped me up 2 milligrams to where I was before the Relapse to see if it brought me out of it. It did. He kept me at that low dosage until we tried again to bring me down to see if I Relapsed again. This went on for some time.
Thankfully, to this day he is the one who "Monitors" me.
Two years later in the Summer of 2000, I was doing well. Doing well with H.E. is not necessarily what one was Before H.E. However, it is definitely quite a significant improvement compared to Before Treatment vs. No Treatment.
Before H.E. is in the past. I don't look back, I look forward. I was amazed when Treatment began that within 48 hours of the High Pulse IV Steroid Treatment, I no longer needed the cane that was so necessary for three years. My speech was perfect. I no longer sounded like "Elmer Fudd." My double digit numbers no longer came out in single digits. I could say: "Twentyfour," instead of: "Two - Four."
Other things did improve, yet never to be the same. I have my B.A. in English and was a prolific reader. I can no longer read a book. Cannot stay with the story line, or characters. Get to page 3 and have no idea what is going on in the story. Listening to the book on an audio tape is useless. Even though I am not reading it, trying to listen to the story is futile. There are too many distractions, visually.
I can no longer read or even flip through a magazine. Too much visual information on the page. My Brain is unable to process the information, images and advertisements. To this day I read the newspaper every morning. Instead of it taking me 45 minutes to read it, it now takes me over two hours. I may be unable to tell you what I read, but I WILL read the newspaper EVERY morning!
When it comes to the Case Studies, and to my knowledge about H.E., it is my life on the line. My knowledge about my disease was and is paramount. Not just for me, but for so many others with Hashimoto's Encephalopathy.
In order to retain what I was reading, as highly technical as it is, the medical terminology that is used, I would and still do, the same routine. I will read the same Study, over and over again, for 4 - 5 - 6 hours. Over and over and over.
In the Summer of 2000 I was going very well. Well enough to realize one thing I did not loose. My ability to write. My IQ did not change. I still have above average intelligence. My personality did not change. Neither did my sense of humor. I am still ME. H.E. did not change WHO I am. Just certain areas in the Left Hemisphere of my Brain. My Frontal Lobe is intact. I discovered I could still write. Not by hand. That is gone. I never forgot where the letters were on a keyboard.
I wrote about H.E. and my Article was published on the Internet. HELPS continued to grow and expand. The emails I was receiving from my Web Site and Article were increasing every day. More and more poured into my Inbox. I still continued to research for more Case Studies on H.E. I never expected it to explode and snowball the way it has.
Never in my wildest dreams did I envision that I would make such an impact on so many peoples' lives. So many from all over the World.
ONE person, WITH H.E., doing the work of 2 people. To this day, it has not changed. Yet the workload has multiplied tremondously. No matter how hard I try, how hard I push, I kept and keep falling behind as the influx of emails from people all over the USA and the World increase in such volume. So many. No longer helping ONE person with H.E., helping literally hundreds and hundreds of people Diagnosed with Hashimoto's Encephalopathy. hundreds and hundreds of people being Treated for Hashimoto's Encephalopathy.
Thousands of emails have been exchanged. Much knowledge was and is shared. Fiction and Hearsay corrected, with Facts. So many with H.E. All a little different, yet all of us the same. So frightened, terrified, not just with their H.E. Symptoms or those of their loved one, but also with hundreds of questions about different Treatments for H.E., side effects of Treatments. The endless and invasive Neurological Tests. Their lives totally changing, turned upside down.
The horror stories about their H.E. Symptoms or those of their loved ones. Details about the results of their Neurological Tests. Abnormal EEG's, or MRI's, PET Scans, or Lumbar Punctures. I would explain that there was and is no definitive test for H.E. How difficult it is for a Physician to Diagnose H.E. How all the Neurological Tests I had were all Normal - again and again. Yet, I too had H.E. I knew exactly how they felt.
I would explain again, there was no definitive TEST to prove H.E. as a Diagnosis. I would tell the people in HELPS and those who emailed me privately, time and time again, how difficult it is for a Medical Professional to clearly diagnose H.E.
That yes, they had to endure the endless Neurological Tests in order for their Physician to rule out a dozen other possible Neurological conditions and/or diseases. I would tell them it was a necessary "Process of Elimination" to determine what they or their loved one DID NOT have.
I would emphasize how important it is to have their Neurologist and Endocrinologist work together. I would explain to them the complexities and frustrations that Physicians have with evaluating the Test results. How all of us differ so much with our results. And how so many of us share the same or similar Test results. How some can have abnormal EEG's; or MRI's and their CSF may show elevated Protein or Oligoclonal Bands, or it may be Normal. Then again these same Neurological Tests for some, may be Normal EEG's, and MRI's yet their CSF may be as stated above. Or their EEG could show generalized diffuse slowing, slow wave activity or bilateral temporal and frontal spikes. Yet their MRI could be Normal. And how some like myself, all of these Neurological Tests mentioned and others, would be Normal. Yet I was clearly Symptomatic for Hashimoto's Encephalopathy.
For me it appeared as if I had a Stroke, but no evidence of one showed anywhere. Before my correct diagnosis, I stopped the invasive Neurological Tests when the final Test that Neurologist Number 3 wanted was a Brain Biopsy. I am glad I did. Because Brain Biopsies really don't tell Medical Professionals anything about H.E.
In my FAQ: "Type I and Type II H.E." I list the Symptoms some Patients with H.E. may experience. According to the literature I referenced in my Article on H.E., they defined Type I H.E. as Stroke-like episodes. Aphasia, Ataxia, Myoclonus, confusion, hemiparesis, etc. This is the type of H.E. I have. Type II Symptoms are more indicative of dementia, coma, psychosis, psychotic episodes, seizures, incontinence, hallucinations, confusion, etc. Type I and Type II Symptoms often overlap. People with H.E. can have primarily Type II Symptomology with a couple Type I Symptoms thrown in. And vice versa. According to the literature listed in my Bibliography, the majority of H.E. Patients suffer from Type II Symptomology.
It is quite a conundrum for Medical Professionals to solve.
It is unfortunate when someone is suffering with H.E. Symptoms, and the Medical Professional they trusted easily dismisses their symptoms as stress related, or psychiatric manifestations. Keep in mind when H.E. presents, so many of us seek a Medical Specialist in an area we have never been exposed to. Clueless about what to expect.
We know what to expect when we go to our Dentist. We women know what to expect when we go to our Gynecologist. We know what to expect when we take a child to the Pediatrician. We know what to expect when we go to our Internal Medicine Physician. However, so many of us have never been to a Neurologist. So many of us have never been to Medical Specialists we never even knew existed. For example, a Neuro-Ophthomologist.
Totally Uncharted Territory for us. Unchartered Territory for the Medical Professional Diagnosing H.E.
I could tell them what their loved one with H.E. was feeling - INSIDE. How I know so very well, what they are feeling with H.E. Perhaps not all of the physical symptomology, but definitely what is going through their minds, how their thinking process is now, how aware they/we are of the changes within our minds to perform every day tasks, that we can still do - however now it takes us longer to perform a simple task, and we know it. It is difficult to express, to put into words or scenarios that loved ones can relate to, because there are none that come even close.
What it is like for that person with H.E., who has difficulty explaining to their families, loved ones, what it is like. How incredibly relieved that person with H.E. is - when they discover that there is someone out there who can truly understand what it is like to have, and to live, with H.E. Every DAY.
I would explain to the family, what it's like for a person with H.E. to know exactly what word you want to use, but you are unable to 'find' it within that amazing Data Base - your Brain. You know it is there. Like having a word on the tip of your tongue. Your brain mentally searching every 'file drawer' within your vocabulary. When you do 'find' a word, the one you choose with such incredible effort, that it is not exactly the one you were searching for, and you are very aware of it. It takes an enormous amount of mental effort to do something so simple that you know is not complicated. How frustrated you are - because you know it is not difficult - you know what word you want - you know this should take no effort, you know it is there - misfiled - you keep looking for it. The word you searched for in every compartment of your Brain, just slips away, like a mist. You are so close and you know it. The word you select, is not precisely the word that you were searching. However, the word you did select and did use is so very close in meaning, to that elusive word you know so well but could not 'find.'
How when you do 'find' that word so similar in meaning, not exactly the word you spent so much effort searching for - next comes explaining what it is like not being able to get it from: Point 'A' - your Brain; to Point 'B' - your Speech.
I always say to the family members: For the person with H.E. - What YOU do without any effort whatsoever; what YOU do without even thinking about it; what YOU take for granted and do so easily; what YOU do so fluidly - a person with H.E., whether it be forming a sentence, picking up an object, attempting to multi-task, which is now a thing of the past - what is EASY, NATURAL, NO EFFORT for YOU - for a person with H.E., it is an exhausting and enormous effort. And we know it. We are so aware.
What it is like not being able to do simple multiplication tables 'in your head.' Because you cannot 'SEE' the answers inside your head like you could before. "Go ahead do it," I would say. Make it simple: In your mind do: 2 x 2 equals... 2 x 3 equals... etc. Then I would say - Now see how you can "SEE" the multiplication table of 2 x 2 equals, and so on - notice how you can "SEE" the numbers and answers visualized in your mind? Some of us cannot 'SEE' them anymore. I can not. It is as if we cannot mentally visualize them 'in our mind.' With H.E. trying to talk to more than one person at a time is nearly impossible. We can only focus on ONE PERSON talking to us in a conversation, not two or three. How difficult and how much effort it takes just to do that.
Sometimes it seems like our Brains are going too fast. Like a ping pong ball out of control inside our heads. Going in different directions. Unable to stay on the subject. Often we do not complete our sentences before our mind jumps to the next thing we want to say, and knowing we did not finish what we were just saying. A game of Leap Frog that we do not want to play. How frustrated we are with what is happening and how helpless we are to stop it. Importantly, how aware we are of all that is happening.
An example of another one of my "H.E. Leftovers:" I can delegate just fine. I know exactly what I want done and how. But I can no longer 'implement the task.' I can tell you how I want it done, what I want done, but I am unable to do it. It is difficult for people to fully comprehend what it is like. They have nothing to compare it to in regards to anything they have experienced. Just as I have never broken my leg, for someone to explain it to me - what it was like to break it; what it was like with a cast on it; what it was like after the cast came off. I could never fully understand what it would be like to break my leg. Simplistic analogy, I know. I do my best to explain what H.E. is like. Hopeful that they grasp the concept of what I am trying to tell them.
I tell people with H.E. and their family members, how important it is to use the right wording when they tell their Physician what is happening. I found out, unfortunately by trial and error, how some in the Medical Community can misunderstand what we are trying to explain to them. How they can draw conclusions themselves because we are unable to use their terminology to describe what we are feeling. No Medical Professional expects a Patient to know medical terminology. The majority of Medical Professionals know how to correctly interrupt what a Patient is trying to explain.
An example of how a few can misinterpret what you are trying to explain: Many people with Hashimoto's Encephalopathy have Seizures. Grand Mal and/or Petite Mal. However, some have Myoclonus - uncontrollable muscle spasms and jerking movements. It can affect the entire body and resemble a Seizure. Yet the person never looses consciousness, is alert and totally aware. It could be the entire body or just the upper body, or the limbs. When I had my first Myoclonus attack I knew nothing about Myoclonus. I knew I was on the floor, my entire body thrashing around for over 30 minutes. Conscious, alert and aware of what was happening.
Therefore, the only way I could describe what happened to Neurologists was using the only word I could think of - a Seizure. But I did not have Seizures. Not as the Medical Community recognizes Seizures. I did not know any other word to describe it.
When someone with H.E. mentions how things 'fall from their hands,' I ask them - can you pick up a coffee mug, yet have difficulty with a paper clip? Or a piece of paper? Like turning a page in the newspaper. Yes, many would say. They would say it with such a sense of Relief! That they are not the only one who has these simple difficulties. Then I would add, how about items that do have some weight, and they too tend to 'fall out of our grasp.' Or we just miss our reach for it, enough to knock it on the floor, or ground. As if our hands and fingers are not doing exactly what our Brain is instructing them to do, to perform it automatically, without even thinking. Simple objects like: tweezers, silverware, small scissors, even needle nose pliers - drop or fumble from our hands. We get a lot of physical therapy bending down to pick them up.
Think of what it must be like for your Brain to coordinate the messages it is sending to your muscles, tendons. Commands to apply just so much pressure, hold an object, turn it a certain way. All these 'commands' and 'instructions' from your Brain happen at such lightening speed. Neurons, electrical impulses carrying the messages to areas of your brain that control these simple movements. These message carriers, before H.E., would perform these tasks in nano-seconds, with no pre-formed thought of picking an object up, holding it in your hand or fingers. Maneuvering the simple object. People who do not have H.E. do it without even thinking about each individual step.
How can one explain this to a Medical Professional accurately? How can one explain this to their family member? The person with H.E. knows it is difficult and frustrating. Knows that every minor movement does not need such unprecedented concentration.
I would suggest that they tell their Physician they are having problems with their Fine Motor Movements. I know this part of H.E. well. To their Physician, it describes what is happening. Is it the absolute correct medical term for this? I don't know. But I know this. Those three words describe the difficulty of picking up something light vs. picking up something with some weight to it. Perhaps this describes more accurately to a Medical Professional, that the person WITH H.E. knows how to USE these objects, RECOGNIZES the objects, knows HOW to pick them up properly.
I have had H.E. for 10 years. Does it get a little easier? Have Neurons re-routed themselves to take a different 'road' to get to their destination in order to deliver that message? Perhaps. What I did these 10 years was what I refer to as: 'getting clever, getting more creative.' Having H.E. and being alone, I discovered I needed to figure out how I can compensate for some of these annoying difficulties.
My top priority - dealing with and living with H.E. was not difficult. Easy answer: Keeping my sense of humor. It never left me.
Then I had to figure out how to weave the 'clever and creative' ways I invented and to do them so easily that no one notices my little 'tricks.' I have Dyscalcula. My higher math functions got zapped. I can no longer do simple math with a pen and paper, let alone in my head. So, I use a calculator. I balance my checkbook every month. To the penny. Before H.E., it would take me no more than 20 minutes. Now it takes me nearly 2 hours. But that is not the point. The point is - I can do it. I do it to the penny every time - there are no errors.
I have Dysgraphia. My once beautiful penmanship now a child-like scrawl. My printing is okay. So I print. As I become tired, my printing gets worse. You see, that too is an effort. I use a pen with a larger grip, wider stroke. No more fine point pens. Flairs work much better on a lined 8-1/2 x 11 pad.
My stamina is not even close to what it was before H.E. I tire easily and quickly. There no longer exists: "Getting a second wind." I am better in the mornings than I am by late afternoon. I think I hate this part worse of all.
Memory? Notes. I print everything down. I have notes everywhere. Notes of notes! I made all of the above a NEW habit. Indeed it took time, but once I got into the habit of using a calculator, of printing instead of writing, figuring out which type of pen or marker makes my effort to print a little easier. You see, I 'got clever.'
One must be willing AND able to adapt. That is what I mean when I refer to 'getting clever, getting creative.' This I know very well. So I adapted to this unexpected fork, that suddenly appeared along the road. No one taught me how to adapt, where and how to make things a little easier. How to 'deal' with H.E. How to control my H.E. and not let my H.E. control me. I figured it out.
There were no options. None. No one to count on but me. From the beginning, I knew I had to move Forward. And not look back. That today is today, yesterday is gone, and tomorrow isn't even here yet.
A Positive Attitude is EVERYTHING when it comes to H.E.
I would do my best to explain what Relapsing was like - for ME. I could not predict what it would be like for them. What my Doctor and I had done to counter my Relapses. What can trigger a Relapse: Stress both good and bad will. Getting overtired, which happens so easily and quickly. These are our worse enemies.
When my Mom passed away in July 2003, I had a very bad Relapse. An understatement if there ever was one. Again, I did it ALONE. I watched her die - ALONE. I arranged her funeral from 1,500 miles away - ALONE. I mourned the loss of my Mother, ALONE. ALONE was not and is not a choice.
I would tell them how important it is to pay attention to their bodies. Know their medications and their side effects. Get educated about their medications, about their Thyroid condition, or any other related autoimmune disease or unrelated medical condition they may have. Know the difference between their H.E. Symptoms and what are not H.E. related. Discuss with their Physician clearly what they were and are experiencing.
I have walked that road already. Still do and now I always will. I have never forgotten how it felt going through the stages of Fear. From being very Scared, to becoming so Frightened, then feeling Terrified. I did the best I could to answer each and every person who wrote and writes to me. I felt and feel to this day, very bad about the ones I did not get to answer. Even without having H.E. the volume of work involved with answering the multitude of emails is a tremondous task.
I have had 10 years with H.E. compared to those recently diagnosed. I guess I have had a lot of practice. I have learned to become what I call "Getting Clever, or Creative" with my H.E. Adapting and Devising ways to assist some of the areas that I am now deficient in.
I would tell them that they, or their loved one is still the same person they were before H.E. That even though Hashimoto's Encephalopathy is not curable, it is TREATABLE. That the Treatment process, no matter which is best for THEIR H.E., will be a Long Road. Most importantly, that Long Road during Treatment is worth it.
H.E. consists of what I call "GOOD DAYS" and "BAD DAYS." When I had a "Bad Day" I always told myself: "Tomorrow WILL be a Better Day. If it's not, then the Day After WILL be a Better Day." I did this constantly, consistently. If I did have a "Good Day" or even a "Mediocre Day" it was a precious Gift. I would be thankful for that "Good Day."
AFTER Treatment a "Good Day" was followed by "Good Days" - plural. Did I dare hope to have a "Good Week?" I did. Did I dare hope to have "Good Months?" There was only one way to find out. I dove in head first into those "Good Weeks," to see if I could indeed have "Good Months."
I rode those "Good Days" like a crest of a wave. Not faltering, feeling safe on my 'surfboard.' My feet securely and solidly held on to that "Good Day." I make my way to the shore, flawlessly. My "Good Day," at last was: a Perfect Ride and a Perfect Wave. Then it came time to see if a "Good Day" would indeed become "Good Days." I would paddle out to catch one as the next set rolled in. I knew the ride could be smooth, or it may not be - chances I was more than willing to take. I could be caught unaware (perhaps I overtired myself earlier that day - not difficult to do.) I may tumble off into white water, churning me around, pulling me down.
But you see, I'm a very good swimmer. I would get back on that 'surfboard,' sit out a few sets and rest. Then when I was good and ready, I would watch the next set roll in, and again catch one of those waves. Always looking for and wanting so much a "Perfect Ride and a Perfect Wave."
The "Good Weeks" did indeed turn into "Good Months." Could "Good Years" be within my grasp? Yes. I am proof that they are. At last, after 10 long years, I've caught that "Perfect Ride and the Perfect Wave" and I want to keep going. You see nothing will stop me from my quest, not even H.E. - I have already tasted the "Good Months," and now the "Good Years." Some days can still be salty, however they are few and far between.
I can only speak as an experienced H.E. Patient...and if I could go through: Horrifying H.E. Symptoms; "Extensive Neurological Testing," receive Misdiagnoses that were one death sentence after another, and still survive. To finally, by a most incredible quirk of fate, receive a CORRECT Diagnosis. Two long years later, actually get appropriate Treatment for my H.E. If I could do it ALONE, with NO emotional support, NO family OR friends to help me - THEY - AND YOU - CAN DO IT TOO!
Yes, H.E. does change your Life. Yes, H.E. is TREATABLE. Yes, a common denominator in us all are Elevated Thyroid Antibodies. However, millions of people have Elevated Thyroid Antibodies (Hashimoto's Thyroiditis) and do not get H.E.
Life is about choices. Some we can control. Some we can not. We did not seek out H.E. For some unknown reason H.E. sought us.
My question has always been: What is the common thread that ties so many of us with H.E. together?
We come from all walks of life, from every age group - children to adults, as many men as women, we are all over this Globe.
There must be another common denominator that we share.
WHY DID HASHIMOTO'S ENCEPHALOPATHY CHOOSE US?
Beverly J. Seminara
International Patient Advocate
NOTE: The "VIEWER EMAIL FORM" provided below, is for: Medical Professionals, Researchers, Medical Students, Universities and the Media, ONLY.
MERCATOR GLOBAL MAP: This image is a map taken and/or modified from the Central Intelligence Agency's World Factbook. Under United States copyright law, all information and images from the World Factbook are public domain. Wikipedia The Free Encyclopedia
FLORIDA - USA: Taken from Shuttle Mission STS-95 on 31st October 1998. This image originally came from a NASA website. All works created by NASA are in the public domain, with the exception of the usage-restricted NASA logo. Works created by the U.S. federal government cannot be copyrighted. Wikipedia The Free Encyclopedia
My Favorite - Coconut Palm Tree
The photographs published here were ALL created by the authors of this site and we renounce our rights on these photographs. You can use them freely, for both personal and professional use. If you wish to use the photos, you can indicate that they come from Free One Line Photos
|HASHIMOTO'S ENCEPHALOPATHY - A COMPLETE LIST OF PUBLISHED CASE STUDIES|
Port St. Lucie, FL