Talk Show Host Wendy Williams Has Grave's Disease

Kudos to talk show host Wendy Williams for sharing that she has Grave's Disease. Williams appeared on The Doctors, yesterday.

Theraband Exercises for Cervical Dystonia

Theraband Exercises for Cervical Dystonia:
http://www.livestrong.com/article/311839-theraband-exercises-for-cervical-dystonia/

Great Tips from the Dystonia Medical Research Foundation

Great tips from the Dystonia Medical Research Foundation:
http://dmrfenews.blogspot.com/2010/11/dmrf-enews-november-2010.html

How to Be a Friend When Your Friend is Chronically Ill...

I have written How to Be a Friend When Your Friend is Chronically Ill. View the article at:

http://vonneb.wordpress.com/2010/11/03/how-to-be-a-friend-when-your-friend-is-chronically-ill/

DMFR Member Educates Continental Employees About Dystonia

Education about Dystonia:

http://www.dystonia-foundation.org/pages/dmrf_member_educates_continental_airlines_employees/506.php

Teen Who Has Dystonia Raises $300,000.00 For The Cause!

View article about a teen who has raised money for Dystonia research:

http://www.courier-journal.com/article/20101027/ZONE04/310270022

Vote, Vote, Vote

Please get out and vote on Nov. 2. This is a very important election which could affect things like Healthcare Reform, etc. So, please let your voice be heard...

Movement Disorders: Cleveland Clinic Is Hosting An Online Chat

Cleveland Clinic Online Health Chat for Movement Disorders on Friday, October 29, 2010. For more information, visit:

http://www.clevelandclinic.org/health/chatreg/ChatPage.aspx?ChatId=1130

Michael J. Fox on Parkinson's and Life

Michael J. Fox on Parkinson's and Life with CNN's Dr. Sanjay Gupta:


http://pagingdrgupta.blogs.cnn.com/2010/09/29/michael-j-fox-on-parkisons-and-life/#comment-82766

Minneapolis Woman With Debilitating Movement Disorder To Compete In Twin Cities Marathon

Women with Dystonia Competes in Twin Cities Marathon:

http://www.i-newswire.com/minneapolis-woman-with-debilitating/62488

Jake's Ride

A child (Jake) has DBS surgery to treat Dystonia...

http://www.cbsnews.com/video/watch/?id=6901023n

(Note: The intro advertisement is a bit choppy, but it smooths out nicely...be patient)

National Geographic: A Man Afflicted With Dystonia

Correlation Between Dystonia and Parkinson's Disease

The DMRF launches two new fundraising programs.

The Dystonia Medical Research Foundation launches two new fundraising programs, Dogs4Dystonia and Dystance4Dystonia. For more details, view:

http://dmrfenews.blogspot.com/2010/08/dmrf-enews-july-2010.html

"Dystonia Stealing Career From Young Photographer"

See story, "Dystonia Stealing Career From Young Photographer" at:

http://www.webcastr.com/videos/news/rare-disease-dystonia-stealing-career-from-young-photographer.html

The Today Show discusses 20 years of ADA (Americans With Disabilities Act)

The Today Show discusses 20 years of ADA:


http://today.msnbc.msn.com/id/26184891/vp/38411331#38411331

Dystonia Survey

Share your experiences with Dystonia. The survey link can be found at:

http://www.surveymonkey.com/s/LZSJTVF

Any insight into The ST Recovery Clinic?

I believe that I have asked this question before. I'm not sure who is reading this blog (Hopefully, a few people...). But, my question is for anyone (with Cervical Dystonia) who has worked with The ST Recovery Clinic, under the guidance of Abby Brown.

I know the program does not claim to offer a cure for the disorder. But, I was wondering if anyone can attest to the program having worked to make the symptoms of CD easier to deal with. I would love to talk with someone who has tried the program.

As, it is expensive. But, I've gone through physical therapy which is also expensive. Due to no fault of the PTs, treatment is sort of a guessing game, to a large extent. My last PT apologized for not being able to help me more. He did his best. It's just the nature of the beast...

So, if anyone has been a "pateint" under The ST Recovery Clinic and has any feedback, please share with me. I think many of us who are suffering with the discomfort and pain of this disorder would appreciate it.

Thank you

The Dystonia Coalition

Information about The Dystonia Coalition:

http://www.movementdisorders.org/monthly_edition/2010/04/dystonia_coalition.php

The American Dystonia Society

The American Dystonia Society seems to be making a strong effort to educate people about Dystonia. Their efforts to raise funds for Dystonia research appear to be very impressive as well. View info about The American Dystonia Society at:


http://www.dystoniasociety.org/

Dawn Brinkley to Promote Dystonia Awareness at Mrs. United States Pageant

Dawn Brinkley to Promote Dystonia Awareness at Upcoming Mrs. United States Pageant:


http://www.i-newswire.com/dawn-brinkley-to-promote-dystonia/47375

Facts About Dystonia

The following is a fact sheet about Dystonia:

http://www.aans.org/en/Patient%20Information/Conditions%20and%20Treatments/Dystonia.aspx

Article About a Young Woman Who Has Dystonia

Through another blog that discusses living with Dystonia, I came across this interesting story about a young lady who has Dystonia:

http://newstranscript.gmnews.com/news/2006-06-07/Front_Page/Family_brings_awareness_to_struggle_with_dystonia.html

A Beauty Queen Who Has Cervical Dystonia

Mrs. Carolina is a patient advocate for those with Cervical Dystonia:

http://mrsnorthcarolinaunitedstates.com/Meet_Mrs.html

http://www.stdystonia.org/about/stories.cfm?id=61

National Geographic: Episode on Muscles discusses Dystonia as well as another disorder which affects muscles

http://channel.nationalgeographic.com/episode/muscles-4923/Overview#tab-Videos/08202_00

Article: Integrated functional network could explain some mysteries of parkinsons and dystonia

http://itisinteresting.me/2010/05/integrated-functional-network-could-explain-some-mysteries-of-parkinsons-and-dystonia/

Dystonia in the News: Dystonia on Good Morning America

Today is World Autism Day

Autism is one of those inexplicable neurological diseases--one day the afflicted child is fine and then it's like the lights go out on their personality, emotions, and overall functioning. This must be a devastating disorder to parents and families of children who have been stricken. My heart goes out to anyone and everyone who has been touched by Autism.

For more information, visit:

http://www.worldautismawarenessday.org/site/c.egLMI2ODKpF/b.3917065/

Lupus Advocacy Day

For information, visit the following blog:
http://www.lupusgirlgoesraw.com/2010/03/lupus-advocacy-day.html

Article: Coping With Ups and Downs of Thyroid Disease

http://www.dailynews.com/health/ci_14648718

Boy lost his mom due to lack of healthcare

http://

National Autoimmune Diseases Awareness Month

Senate Resolution 372 designates March "National Autoimmune Diseases Awareness Month." Hopefully this designation will bring much needed attention and awareness to these debilitating diseases.

For more information, read the following: http://www.medicalnewstoday.com/articles/181565.php

Story of a Young Man Who Has Dystonia

The following is an article that was published in the Mat-Su Valley Frontiersman about a young man who has Generalized Dystonia. View the article at:

http://www.frontiersman.com/articles/2010/02/22/valley_life/doc4b835a80199bb678637711.txt

Documentary: My Father, My Brother, and Me

In the latest edition of Neurology Now, there is an article featuring PBS Frontline's Dave Iverson. He discusses his struggle with Parkinson's Disease. He also discusses his documentary, My Father, My Brother, and Me. This documentary appeared on PBS last week. However I was able to watch the entire documentary at http://www.pbs.org/wgbh/pages/frontline/video/flv/generic.html?s=frol02p6c7&continuous=1.

Anyone who has Parkinson's Disease or knows anyone with the neurodegenerative disorder should view this documentary. In fact, anyone with any type of neurological and/or chronic disorder should view this documentary.

The documentary covers lots of territory in regards to Parkinson's Disease. The potential benefits of exercise in terms of possibly reducing the affects of Parkinson's are discussed in the film. In addition, stem cell research is also addressed.

All I can say is that this documentary is extremely informative as it sheds light on potential cures for this disease. It surely gives a sense of hope for patients who are suffering from Parkinson's Disease.

Stories of Others: "Walking My Path With Parkinson's"

I came across an interesting blog by a woman who has Parkinson's Disease. Her blog is called Walking My Path With Parkinson's.


http://marian-pathwalk.blogspot.com/2010/02/what-does-parkinsons-feel-likerevisited.html

The Dystonia Medical Research Foundation (DMRF) Updates

Updates from The Medical Research Foundation at:

http://dmrfenews.blogspot.com/2010/02/dmrf-enews-november-2009.html

Power of the Mind

Some words of wisdom from The Dalai Lama:

http://www.healyourlife.com/author-his-holiness-the-dalai-lama/2010/02/wisdom/inspiration/the-power-of-the-mind&utm_id=HYLFB

Mother's Fight to Help Her Son Who Has Dystonia

View story about a mother who fought to help her son who has Dystonia at:



http://www.wkyc.com/news/health/health_article.aspx?storyid=130193&catid=7

Dystonia Study: UAB to partner with Harvard Medical and Mt. Sinai on 5-year study

http://www.myfoxal.com/Global/story.asp?S=11902696

Let 'em Have it Janie!!!

Janie B., founder of Stop the Thyroid Madness, had a confrontation with a former Pharmaceutical Rep of Abbott Labs regarding Synthroid. Way to go Janie!



Read about it at :



http://www.stopthethyroidmadness.com/2010/01/24/guess-who-started-a-conversation-with-me/

What's Really in Our Food?

On a recent episode of The Oprah Winfrey Show, Oprah discussed the importance of eating "real food" with author Michael Pollan.

On the show, Pollan discussed how we are being harmed by the foods that are being sold in typical grocery stores. He also shed light on many horrifying practices that are taking place within the food industry. For example, animals are being given tons of antibiotics in order to make them bigger, not healthier. In turn, we [meat eaters] are eating the animals in the form of chicken and steak dinners. While the food often looks and tastes good, we are actually eating products that are helping to make people sick and/or fat.

Consumers have the power to help change the way that the food manufacturing industry is allowed to operate. As Pollan says, we have the power three times a day--breakfast, lunch, and dinner. Enough is enough. I agree that there needs to be a Food Revolution, because much of the stuff that we buy in the grocery store is junk filled crap (i.e. high fructose corn syrup).

At the end of the show, Oprah stated that the video, Food, Inc., can be ordered for $9.99 Friday--until midnight. Plus, there is also a free download of the movie if you order it. So, you can watch it immediately. In fact, I'm listening to the DVD as I am typing. It is very well done and so informative in that it exposes so much. I also ordered Food Rules: An Eater's Manual by Michael Pollan.

I am excited that conversations are being initiated in magazines, on T.V. shows, and amongst individuals about how we can improve our health by eating healthier, safer foods. We, as consumers, need to let it be known that we don't want harmful dyes or other harmful additives placed into our food any longer; research has shown that dyes can cause hyperactivity in children.

To order Food, Inc. visit https://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=Food+Inc.

To order Food Rules: An Eater's Manual by Michael Pollan, visit http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=Michael+Pollan

Update from the organization Care4dystonia

http://care4dystonia.org/

Blog repost from Livable Low Carb: Flour People Getting Twitchy

The following is a link to a blog post written by Dr. A at Livable Low Carb. Basically the article/blog is stating that just because the doctor TELLS you that you don't have Celiac Disease, it doesn't necessarily mean that you don't have a sensitivity or intolerance to foods that contain gluten. Regardless of the doctor's assessment, you know your body best. If after ingesting gluten, for example, you feel like crap, then your body just might have a problem when it comes to digesting gluten--regardless of a test or assessment by a doctor. The same applies to other foods as well. You may not have an allergy to a certain food, but you might have a food sensitivity which can also cause compounding health issues (i.e. bloating, swelling, constipation, etc.). View the blog post at:

http://comfort-eaters-diet.blogspot.com/2010/01/flour-people-getting-twitchy.html

The Second Beat Dystonia Advocacy Call Scheduled for Sunday, February 7, 2010

For more information, visit:

http://www.lifewithdystonia.com/2010/01/hello-tribe-another-call-scheduled.html

January is Thyroid Awareness Month

January is Thyroid Awareness Month. Visit the following link for more information about Thyroid Disease/Disorders:

http://www.thyroidawarenessmonth.com/

Thyroid Patient Community Call on Thursday, January 14, 2010

The following was taken directly from http://www.stopthethyroidmadness.com/2010/01/11/dr-lowe-wants-to-talk-to-you/ :



On the heels of an informative and wonderful THYROID PATIENT COMMUNITY CALL on Talkshoe last week with Dr. John C. Lowe (see posts below), we’re going to do it again this coming Thursday, January 14th. Join us for Part 2!


Dr. Lowe is a fibromyalgia, thyroid, and metabolism researcher who has always been such a champion for better diagnosis and treatment in thyroid patients. He is Editor-in-Chief of the open access journal http://www.thyroidscience.com/ as well as his own http://www.drlowe.com/.

Visit http://www.stopthethyroidmadness.com/2010/01/11/dr-lowe-wants-to-talk-to-you/ for more info on how to be a part of the community call.

Thyroid Disorders: why don't T4 only meds work for everyone?

I happened to stumble upon http://www.iwantmyt3.com/t3-test-questions.htm. On this site, Dr. Bouc discusses Thyroid disorders and why T4 only meds (i.e. Synthroid and Levoxyl) are not effective for everyone.

As a visual learner, I like that he uses repetition and drawings to relay the info. His diagram helped to further explain and help me to understand the reasons why T4 meds are not always effective.

I especially like the part where Dr. Bouc says, "Just telling someone that their Thyroid is normal based on a their TSH level being normal is insanity. You should tell that doctor to have some Prozac." I'd love to say that to quite a few of my doctors--past and present.

It was easier for docs to push antidepressants down my throat versus listening to my numerous complaints that it was possibly my medication (T4 only or Synthetic Thyroid Hormone) that was causing the problem. Gee, isn't it interesting that I can function without an antidepressant now that I'm taking Natural Thyroid Hormone instead of Synthetic Thyroid Hormone.

I just hope that those who have been suffering on T4 only meds will realize that there are alternative treatment options that might work for them. Searching the Internet and becoming a part of a knowledge based group is a great start.

Article: Ups and Downs of Thyroid Disease

View the article, Ups and Downs of Thyroid Disease at:

http://www.mercurynews.com/bay-area-living/ci_14150353

Unfair Treatment of Thyroid Patients; We Need Help!

I will be consistently reblogging this post, because it is important that feedback is received by as many resources as possible...

(Excuse the paragraph breaks;copy and paste aren't working so well for me)

Unfair Treatment of Thyroid Patients; We Need Help!

Out of frustration and concern:

I am trying to figure out how to help in exposing the unfair practices that are taking place in the treatment of patients who suffer from Thyroid disorders in hopes that these inadequate medical practices will change at some point.

Common complaints of patients who are receiving Thyroid Replacement Hormone due to a thyroid disorder are: not being adequately medicated, receiving very limited medication options although there are alternative methods for those who cannot tolerate the meds that are being pushed by a large pharmaceutical company, and being consistently ignored/dismissed by doctors when trying to receive help for lingering symptoms and complications.

Many people need Thyroid Replacement Hormone to stay alive. Current treatment is often unacceptable and must change on all levels including how doctors are being educated about Thyroid disorders and Autoimmune disorders that have led to Thyroid disorders.

I am a member of several well-run online groups which offer great advice and suggestions. We rely heavily on one another because of the lack of proper medical guidance by many doctors. Within these groups, ideas have been bounced around. I know that members have tirelessly written to Congress people, media outlets, The FDA, Endocrinological Organizations, etc. Also, there has been talk of marching in Washington and filing class action lawsuits.

However, this story has not received mainstream attention. No, this situation doesn't affect millions of people. But, there are many lives--at least thousands--that are being or have been negatively impacted by poor medical practices. More importantly, Big Pharma and politics in terms of health care affects everyone!

On the Internet, there are some wonderful groups including Stop the Thyroid Madness and Save Natural Thyroid. Both groups have a wide following. In addition, there are several other individuals and groups of people who are lost and searching for answers. All we want is to go into the doctor's office and have them take the time to see us as a patient and not a number.

Unfortunately, a routine office visit for a Thyroid patient usually goes like this: "Your TSH levels (numbers from a routine blood tests to measure Thyroid Stimulating Hormone) are fine." Then, a prescription for more pills--that make you feel lousy--are written and the doctor tells you they'll see you in a year. If you're lucky, they might listen while you complain about how poorly you're feeling. The "routine" is bitterly sad and it needs to stop. The treatment is unfair and unethical. I've written to a number of media outlets and haven't received a response.

Also, I just emailed an inquiry to 20/20 but the response mentioned that they only accept solicited ideas and items that have not been solicitited will be sent to the legal department. I'm not clear on what this means. I tried to find another contact address/email but can't find one. Does this mean that this particular show does not accept story ideas from outside sources? It doesn't make sense to me. But, if anyone knows what this means, please let me know.

Bottom line--we need help. We are not trying to cause problems. We just want to enjoy our lives. But when you're consistently being under medicated, over medicated, dismissed, and given inadequate treatment, it's a bit hard to enjoy life to its fullest.

So, if anyone has ideas, can offer services, or just wants to vent, please feel free to leave a comment. That includes everyone (lawyers, doctors, advocacy organizations, newspaper reporters, or anyone). All feedback will be greatly appreciated.

Thank you

My most current Tweets on Twitter

Simple Reflection: http://wp.me/pGoUb-3b 27 minutes ago
Worry, Frustration, and Gratitude: http://wp.me/pGoUb-31 about 18 hours ago
Unfair treatment of Thyroid Patients; We Need Help! Tell me what you think at http://chyvonneb.blogspot.com/ 1 day ago
A youngster with Grave's Disease: http://wp.me/pGoUb-2U 2 days ago
Appointment with the cardiologist: http://wp.me/pGoUb-2R 2 days ago

Unfair Treatment of Thyroid Patients; We Need Help!

Out of frustration and concern:

I am trying to figure out how to help in exposing the unfair practices that are taking place in the treatment of patients who suffer from Thyroid disorders in hopes that these inadequate medical practices will change at some point.

Common complaints of patients who are receiving Thyroid Replacement Hormone due to a thyroid disorder are: not being adequately medicated, receiving very limited medication options although there are alternative methods for those who cannot tolerate the meds that are being pushed by a large pharmaceutical company, and being consistently ignored/dismissed by doctors when trying to receive help for lingering symptoms and complications.

Many people need Thyroid Replacement Hormone to stay alive. Current treatment is often unacceptable and must change on all levels including how doctors are being educated about Thyroid disorders and Autoimmune disorders that have led to Thyroid disorders.

I am a member of several well-run online groups which offer great advice and suggestions. We rely heavily on one another because of the lack of proper medical guidance by many doctors.

Within these groups, ideas have been bounced around. I know that members have tirelessly written to Congress people, media outlets, The FDA, Endocrinological Organizations, etc. Also, there has been talk of marching in Washington and filing class action lawsuits.


However, this story has not received mainstream attention. No, this situation doesn't affect millions of people. But, there are many lives--at least thousands--that are being or have been negatively impacted by poor medical practices. More importantly, Big Pharma and politics in terms of health care affects everyone!

On the Internet, there are some wonderful groups including Stop the Thyroid Madness and Save Natural Thyroid. Both groups have a wide following. In addition, there are several other individuals and groups of people who are lost and searching for answers. All we want is to go into the doctor's office and have them take the time to see us as a patient and not a number.

Unfortunately, a routine office visit for a Thyroid patient usually goes like this: "Your TSH levels (numbers from a routine blood tests to measure Thyroid Stimulating Hormone) are fine." Then, a prescription for more pills--that make you feel lousy--are written and the doctor tells you they'll see you in a year. If you're lucky, they might listen while you complain about how poorly you're feeling. The "routine" is bitterly sad and it needs to stop. The treatment is unfair and unethical.



I've written to a number of media outlets and haven't received a response. Also, I just emailed an inquiry to 20/20 but the response mentioned that they only accept solicited ideas and items that have not been solicitited will be sent to the legal department. I'm not clear on what this means. I tried to find another contact address/email but can't find one. Does this mean that this particular show does not accept story ideas from outside sources? It doesn't make sense to me. But, if anyone knows what this means, please let me know.

Bottom line--we need help. We are not trying to cause problems. We just want to enjoy our lives. But when you're consistently being under medicated, over medicated, dismissed, and given inadequate treatment, it's a bit hard to enjoy life to its fullest.

So, if anyone has ideas, can offer services, or just wants to vent, please feel free to leave a comment. That includes everyone (lawyers, doctors, advocacy organizations, newspaper reporters, or anyone). All feedback will be greatly appreciated.

Thank you

Tips from Prevention Magazine: seven foods that shouldn't be eaten

http://www.aolhealth.com/healthy-living/longevity/foods-not-to-eat?icid=mainsearch4dl4link1http%3A%2F%2Fwww.aolhealth.com%2Fhealthy-living%2Flongevity%2Ffoods-not-to-eat

Stop The Thyroid Madness Live Chat Session

I am lovin' technology. If there was ever a time to be sick (bad joke, I know)...Let's just say I feel blessed to be living during the internet era. The internet has truly been beneficial in allowing me to connect with people who are in a similar boat.


Anyway, I was just on a phone/chat session--it lasted at least an hour and a half-- with Janie of Stop the Thyroid Madness and many other callers/listeners who have thyroid related issues (i.e. Hypothyroidism, etc.). Dr. Lowe was the featured guest. He is very knowledgable about the treatment of thyroid disorders. He acknowledged how big pharma is "in bed" with the doctors who are prescribing T4 only meds and how that plays into why patients with Thyroid disorders are often being inadequately treated and medicated. He also gave a wealth of information including info regarding hormones, nutrition, and supplements in relation to thyroid disorders.



Now, I just need to get connected to a group that talks about Grave's Disease, specifically. I have some resources but am not connected with any particular group which has a clear organizer/leader. If anyone has any suggestions, please let me know.



For more info about the above session, please visit:



http://www.stopthethyroidmadness.com/2010/01/04/dr-lowe-is-coming-to-our-party-listen-directly-or-ask-him-questions-one-on-one/

http://www.talkshoe.com/talkshoe/web/talkCast.jsp?masterId=62603&cmd=tc
(link to past episodes)

Winterizing the Thyroid

Mary Shomon's tips for "Winterizing the Thyroid":



http://thyroid.about.com/od/relatedconditions1/a/winterize.htm

Bauchmann-Strauss Dystonia Center of Excellence

New York City's Beth Israel Medical Center is the site of the nation's first ever Bachmann-Strauss Dystonia Center of Excellence:
http://www.dystonia-parkinson.org/index.cfm?fuseaction=home.viewPage&page_ID=5B99D3C4-7E90-9BD4-C155BF235DA7D7A3

An Autoimmune Disorder: Rheumatoid Arthritis

View a woman's story of living with Rheumatoid Arthritis:

http://www.aolhealth.com/condition-center/arthritis/rheumatoid-arthritis-erica-vorhauer?icid=mainsearch4dl3link3http%3A%2F%2Fwww.aolhealth.com%2Fcondition-center%2Farthritis%2Frheumatoid-arthritis-erica-vorhauer

Resources for Neurological Movement Disorders

Resources for people who have Neurological Movement Disorders:

http://www.spiritedmovement.org/images/1_min_guide_to_movement_disorders.pdf
(from: The Spirited Movement Foundation)

Putting a Face on Dystonia

Putting a face on Dystonia...Rogers Hartmann at TEDxSMU.



http://www.pegasusnews.com/news/2009/dec/17/tedxsmu-talk-rogers-hartmann/

The Beat Dystonia Advocacy Call-in

A big thanks to Rogers Hartmann and Renee Leverrier for hosting The Beat Dystonia Advocacy call-in session! It was very nice to talk with fellow Dystonians. I will discuss some of what we talked about in a later post.

Dystonia Conference Session

Dystonia advocate Rogers Hartmann has posted information about a call-in conference, hosted by Beat Dystonia, which will take place on January 3, 2009. For more information, please visit:
http://www.lifewithdystonia.com/2009/12/advocacy-conference-call.html.

The Top 10 Thyroid Stories of the Decade

We're on the brink of another New Year. It's customary to see lists discussing the top (???) of the decade--the top grossing movies, the top musicians, the best songs, etc.

Well, Mary Shomon, author and thyroid disease activist, has written an article, The Top Ten Stories Affecting Thyroid Patients in the Decade from 2000-2009. View the article at:
http://thyroid.about.com/od/thyroidbasicsthyroid101/ss/top-thyroid-stories-2000-2009.htm.
It's pretty interesting.

Suggested Article: "The Agonies of Being Thyroidless"

For anyone contemplating RAI due to Grave's Disease or another condition that has affected the thyroid, please check out the following site at:
http://www.stopthethyroidmadness.com/blog/.

I have had RAI as treatment for Grave's Disease. Since then, there is a little more information out there about this procedure--thanks to patients and advocates who have gone through it and know the associated problems that can occur as a result of destroying the thyroid. Unfortunately, many doctors are quick to suggest RAI because it is a "quick" and "convenient" method of TREATING the disease. However, destroying the thyroid does not cure the underlying disease.

I, like many others, have had major issues as a result of destroying my thyroid function through RAI. Unfortunately, I followed my doctor's advice. So, as I said, I suggest doing the research and heavily weighing your options (i.e. natural therapies to get your conditon under control).

Please know, Grave's Disease must be resolved or you risk other issues such as heart problems and osteoporosis to name a few; doing nothing is not an option. In the end, a more drastic approach such as RAI may be necessary. But, I suggest trying other options first.

My mother has a friend who has a 14 year-old-son with Grave's Disease. Unfortunately, the young man is about to undergo RAI, because antithyroid meds have been ineffective at putting him into remission. Of course, his doctors tell him that most people do well after RAI. Well, this doctor hasn't talked to me or others who haven't done so well. I hope and pray this young man does well. It just breaks my heart that this is his only option.

Hopefully, the future will bring better options for treating conditions that affect the Thyroid!

The Golden Girls: The Sick and Tired Episode

Last night, I watched an episode of The Golden Girls--one of my all time favorite shows; I've probably seen every episode. Unfortunately, I can certainly relate to the "Sick and Tired" episode: The episode in which Dorothy is ill(she has Chronic Fatigue Syndrome), but doctors keep dismissing her concerns. After finally being diagnosed with CFS, she had the opportunity to confront one of her dismissive doctors. Every doctor should see this episode.

Happy Holidays

I wish everyone a Merry Christmas and a Fabulous New Year!!!

Could Brittany Murphy Have Been Suffering From Grave's Disease?

When I heard about the passing of actress Brittany Murphy, I hoped her death wasn't due to a drug overdose or from taking a mixture of prescription drugs--as we've been seeing by the untimely deaths of numerous entertainers.

Then, when I saw recent pictures and footage of her on T.V., I immediately thought that she must have been anorexic. She was grossly thin. Then, I heard that she had a heart ailment.
I also read that Murphy had been reported as saying that certain medications increased her heart rate (this can be dangerous). After hearing all of this, I began to wonder if she could have been suffering from Grave's Disease, an autoimmune disease that can affect the Thyroid.

As a person who has GD, I have been suspected on numerous occasions (by doctors, etc.) of being anorexic. You should've seen me when I was first diagnosed with GD; I seriously looked like a concentration camp victim. As, this disease speeds up the metabolism and causes weight issues regardless of how much is eaten. Even after treatment, I have many issues including the inability to gain weight, intolerance to certain foods and medications, rapid heart rate, etc.

Regardless of what caused Murphy's death, it is so sad and unfortunate that she has passed away at such an early age. My thoughts and prayers are with her family.

_______________________________________________
Below is an article regarding the possibility of Murphy having had a thyroid condition. It looks like I'm not the only one who suspects that this could be a possibility:

http://thyroid.about.com/b/2009/12/22/brittany-murphy-thyroid.htm

Problems With The Standard American Diet

Interesting post on The Standard American Diet:



Source: http://leclinic.blogspot.com/2009/12/sad-diet.html

"Welcome to The Town of Allopath"

This is funny and so true... View a little cartoon that parodies the frequent ineffectiveness of Allopathic Medicine (conventional medicine).

http://www.youtube.com/watch?v=vIhNyX3pRrk

(Welcome to the Town of Allopath: Copyright Mercola.com 2009Original Story by Mike Adams --http://www.naturalnews.com/)

Grave's Disease Resources

The following are resources that give information about Grave's Disease. Remember: Grave's Disease doesn't only cause hyperthyroidism. Yes, Grave's Disease is an Autoimmune Disorder that often affects the thyroid. But, GD has the potential to affect various bodily functions regardless of the overactive thyroid being treated with medication or radioactive iodine.

Even though I've been on this GD roller coaster for at least 10 years, I only started looking into the effects of diet and other factors (i.e. medications, intestinal issues, food intolerances, etc.) when I started developing more illnesses (i.e. Osteopenia, high cholesterol, and Cervical Dystonia--to name a few). Currently, I am reading a book about inflammation (an underlying issue with most illnesses).

Today, I did a few searches: "salt and Grave's Disease" and "foods to avoid with Grave's Disease." I have posted some interesting links below.

http://graves.medshelf.org/Self_Help

http://www.ngdf.org/living_with_gd.php

http://www.gravesdiseasecure.com/gravesdiseasediet.html

http://www.dailystrength.org/c/Graves_Disease/forum/4585748-foods-high-iodine

http://www.thyca.org/Cookbook.pdf

http://www.medicinenet.com/script/main/art.asp?articlekey=53855&page=4

http://eyesee.typepad.com/hyperthyroid_graves_eye/foods-graves-disease/page/2/

There is Still a Shortage of Natural Thyroid Hormone; Where Can You Find Natural Thyroid Hormone?

There continues to be a shortage of Natural Thyroid Hormone. For those who can't tolerate Synthetic Thyroid Hormone, the Save Natural Thryoid Coalition has compiled a list of places where you can get NTH. For more information please click on:

http://spreadsheets.google.com/viewform?formkey=dDQ4WkJwZkZMRXNUU1NaZ1poalR5TFE6MA

Article: Doctors Who Don't Listen to What Part About This Medication Doesn't Work for Me Do You Not Understand?

The following is a good article posted by Mary Shomon (Save Natural Thyroid Hormone). I can totally relate to the letter in that it discusses a patient informing a doctor that they will not take Synthetic Thyroid Hormone. Many health care professionals just don't get that some of us just don't do well on Synthetic Thyroid Hormone. There is a difference. I just wish I had known that sooner.


http://www.hospitalsoup.com/health-conditions/thyroid/doctors-who-dont-listen-what-part-about-this-medication-doesnt-work-for-me-do-you-not-understand

The Today Show: New Hope in Battle Against Cerebral Palsy

My mother brought to my attention that Dr. Nancy Snyderman was on The Today Show discussing the strides that have been made in the therapy and treatment of those afflicted with Cerebral Palsy. Cerebral Palsy is a neurological disorder that appears in infancy or early childhood; it affects movement and muscle coordination.

Dr. Snyderman mentioned how robotics are being used in working with people who have Cerebral Palsy. She also mentioned that under the Obama administration, extraordinary advances are being made in terms of stem cell research. How hopeful and exciting!

Visit msnbc.com for breaking news, world news, and news about the economy

Article: How to Protect Your Health in the Computer Era

The following article, How to Protect Your Health in the Computer Era, was written by Dr. Ben Kim, a chiropractor and acupuncturist. It offers excellent tips including how to protect your lower back, hands and wrists, and the neck from the potentially damaging effects of computer usage. The "neck" section may be especially helpful for my blogging buddies who suffer from Cervical Dystonia.


http://drbenkim.com/protect-health-computer-era.html

Books About Dystonia

I saw some books (about Dystonia) that looked interesting on Amazon.com. One of the books came out today. I have not ready any of them, yet.

Yoga for Movement Disorders: Rebuilding Strength, Balance and Flexibility for Parkinson's Disease and Dystonia (Spiral-bound)~ Renee Le Verrier (Author)

http://www.amazon.com/Yoga-Movement-Disorders-Rebuilding-Flexibility/dp/187341353X/ref=sr_1_2?ie=UTF8&s=books&qid=1259692036&sr=8-2-catcorr



The Dystonia Patient: A Guide to Practical Management (Paperback)~ Michael S. Okun (Author, Editor)
http://www.amazon.com/Dystonia-Patient-Guide-Practical-Management/dp/1933864621/ref=sr_1_3?ie=UTF8&s=books&qid=1259692133&sr=1-3




Living Well with Dystonia: A Patient Guide (Paperback)~ M.D. Daniel Troung (Author), M.D. Mayank Pathak (Author), M.D. Karen Frei (Author)

http://www.amazon.com/Living-Well-Dystonia-Patient-Guide/dp/1932603239/ref=sr_1_8?ie=UTF8&s=books&qid=1259692133&sr=1-8

Twitter Updates

Could problems be linked to Thyroid Disorder? http://www.stopthethyroidmadness.com/2009/11/29/jane-pauley-hives-depression-bipolar/ about a minute ago

Did You Have Your Superfood Today?
http://bit.ly/4v1AFG 55 minutes ago

Physiotherapy for Autoimmune Diseases
http://www.9dom.com/the-types-of-neurological-conditions-and-physiotherapy-used/ about an hour ago

Patient Registry for (Dystonia) Gene Testing @ http://www.lifewithdystonia.com/2009/11/dystonia-international-patient-registry.html about an hour ago

Recent Twitter Updates

Dystonia Treated with Surgically Implanted Pacemaker
http://www.youtube.com/watch?v=wVVrN4tnxVU 5 minutes ago

Reflection--In the Face of Illness: Keeping My Mind From Going There http://vonneb.wordpress.com/2009/11/29/140/ 16 minutes ago

Misinformation About Natural Thyroid Hormone
http://thyroid.about.com/b/2009/11/27/american-thyroid-association-misinformation-natural-thyroid.htm about 22 hours ago

Happy Thanksgiving

Have a Wonderful Thanksgiving!!!

Rogers Hartmann discusses Dystonia

Activist Rogers Hartmann discusses her life with Dystonia and her efforts to raise funds to help in finding a cure for Dystonia at:


http://www.frtv.org/2009/11/tedx-rogers-hartmann-frenemies-dystonia/

The Story of a Man Who Had Sarcoidosis

Below, there is a link to a story about a man named David McClendon, a former newspaper editor. McClendon lived 15 years with Sarcoidosis, an autoimmune disease. With Sarcoidosis, "the body's defenses attack vital organs, including lungs, kidneys, heart, etc. The attacks cause scarring and the scar tissue clump together." Unfortunately, Mr. McClendon recently lost his battle with the disease.

I have never met McClendon. I have never heard of McClendon. But, this story "came to me," and I felt the need and desire to share it. Within the article about McClendon, there is a link to McClendon's blog in which I was able to get an idea about what it's like for people who live with Sarcoidosis. In reading through the blog, I was able to get an idea about his personality and his sense of humor.

As I read parts of McClendon's blog, I was saddened knowing that he is no longer on this earth--may he rest in peace. However, I am glad that he left behind a piece of himself which will hopefully educate others about living and struggling with Sarcoidosis.

Article that discusses David McClendon:
http://www.nhregister.com/articles/2009/11/20/news/b1-beachclmndavid.txt

David McClendon's blog:
http://15yearsofmysarcoidlife.blogspot.com/

I took a look at Clinicaltrials.gov.

After reading a Tweet that discussed clinical trials, I decided to, once again, visit http://clinicaltrials.gov/. On this site, you can find various clinical health trials that are being done.

So, I typed in Dystonia and Cervical Dystonia. There were quite a few listed trials. But, due to my internal sensitivities (i.e. sensitivities to meds, autoimmune issues, etc.), I'm not willing to participate in trials that involve receiving medications or trials that involve invasive procedures (naturally, most of the trials involved chemically invasive procedures).

However, I did find one, potential trial that discusses the usage of Botox to treat Cervical Dystonia. It doesn't appear that this trial requires anything besides observing my response to Botox injections. So, I emailed the group that is overseeing this study to ask some general questions. We'll see what I get back.

I also put in searches such as "Grave's Disease and Dystonia." The search gave me nothing. Online, I have come across quite a few people who have this combination--just as I do. So, this would make for an interesting investigation.

I would love to be part of a research study or investigation that would simply investigate my medical history in conjunction with the history of others who have incurable, hard-to-treat diorders/illnesses.

Studies that I would personally like to participate/offer information to would be studies involving: Cervical Dystonia, Grave's Disease, The effects of Synthroid in treating Hypothyroidism, The effects of Natural Thyroid Hormone in treating Hypothyroidism, Metabolism in relation to Grave's Disease, etc.

As I said, I don't want to be poked and prodded with injections. I just want to be an observation and/or an oral history research participant--so to speak. Maybe the researchers could learn a few things from hearing about my journey.

Researchers and scientists could learn a whole lot more if they, first, focused on the "listening" before trying to focus on the treatment or drug aspect of studies.

Sometimes, it's just best to ask questions and listen to the answers when trying to figure out something--in this case, when trying to figure out the best treatment options for various health conditions. This listening approach could possibly lead to more curative conclusions versus band aide treatments.

Who knows? Pending the right conditions, maybe I'll be a "lab rat" one day.

In the News: New Breast Cancer Recommendations

This is what I have to say about the U.S. Preventative Services Task Force recommendations for breast cancer (other than they suck--LOL):

This week, there have been several recommendations in terms of Women’s Health. For starters, The U.S. Preventative Services Task Force—an independent panel of doctors and researchers—has issued recommendations as to when women should receive mammographies.


Prior to this recommendation, standard guidelines have suggested that a woman should receive an annual mammography, starting at the age of 40. In contradiction, The U.S. Preventative Services Task Force recommends that a woman has her first mammography at the age of 50 and every two years, thereafter.


If the recommendations of the task force were to ever be formally mandated, it would undoubtedly be at the cost of many lives. Kathleen Sebelius, The Secretary of Health and Human Services, has made it clear that women—in consultation with their doctors—should keep following the current mammography guidelines.


It is interesting—interesting indeed—that these recommendations have been made in the shadows of great health care debate. While Sebelius states that she can’t see insurance companies altering coverage of mammograms based on the recommendations of the task force, there is much cause for concern.


Increasingly, insurance companies have been barking about the costs associated with forking out money for tests and procedures that they deem unnecessary. These types of “scientific” recommendations could very well give insurance companies grounds for reducing coverage further and/or creating more stringent guidelines in terms of what they will or will not cover. It is for this reason that we must clearly voice our concerns and opinions. Things change, and these recommendations have planted seeds for negative change.


Unfortunately, we all know someone who has been diagnosed with cancer and/or has died from the disease. Many of us know someone who has been diagnosed with breast cancer, but they didn’t fit the typical breast cancer, patient composite—a woman diagnosed with breast cancer before the age of 40 or a man who has been diagnosed with breast cancer, for example.


Fortunately, the lives of many women have been saved by early detection through means of self breast exams and mammographies. One life saved is reason enough to support early detection and routine screenings.

If there were ever a time for socially conscious Americans to stand up in fight, this is that time. We must applaud all—including physicians and politicians—who have voiced a show of support against these potentially dangerous recommendations. A continued show of support for effective breast cancer guidelines will help to put these task force recommendations in the trash where they belong.


With all of this craziness going on, I then woke up this morning to hear that there are recommendations to change guidelines for the annual pap smear. What next? Hopefully, there won’t be anymore harmful recommendations in the near future!!!


For further reading, please review the following articles:


New Advice: Skip Mammograms in 40's start at 50
http://news.yahoo.com/s/ap/20091116/ap_on_he_me/us_med_mammogram_advice


US Mammogram Policy Will Not Change Says Health Secretary
http://www.medicalnewstoday.com/articles/171521.php

Pap Smear Guidelines: New recommendations call for tests every 2 years http://www.chicagotribune.com/health/chi-tc-nw-pap-smears-1119-1120nov20,0,6606495.story

Good News: Unprecedented Monies to Support Dystonia Research

The Dystonia Coalition has obtained an ORD Grant to support Dystonia Research. View the following article:




http://www.dystonia-foundation.org/pages/dystonia_coalition_obtains_ord_grant/362.php

Botox Injection Day

Today, I had a Botox injection appointment (Not for wrinkles--LOL; for the Cervical Dystonia). My last set of injections were done about three months ago. My neurologist injected me six times in various locations of my neck. Of course, I cried. Thankfully, my mother was there to hold my hand. I hope the spasms (especially on the right side of my neck) will get considerably better with this treatment. As usual, I'm glad that's over with!

My Latest Tweets and Retweets

Check out my latest twitter updates. They include the following articles:


The Other Pain Of Autoimmune Disease RT@ http://bit.ly/dNdwZ
(Discusses the emotional pain of dealing with disease)

Calling for a War on DiabetesRT @http://ow.ly/ClmM

Food Poisoning May Hurt For Life @ http://bit.ly/4f54Wk

My reflection on Living With Pain @ http://vonneb.wordpress.com/2009/

Lupus explained: http://bit.ly/1Rr85R

Can I Get An Autoimmune Specialist?

Wouldn't it be nice if everyone with an Autoimmune Disorder received their primary care from an Autoimmune Disorder Specialist?

I was listening to a radio show in which there was a doctor who was discussing Lupus. From listener comments and from my prior interactions with others who have an Autoimmune Disease, a common thread seems to be faulty care from doctors who treat these disorders.

Personally, I see an Endocrinologist once a year; he assesses my Thyroid Hormone levels. Even when I feel like crap, these numbers are usually stable. Unfortunately, I am being seen by a specialist whose primary training has more than likely been in the area of diabetes and/or another area that fits under the Endocrinology umbrella.

I have Grave's Disease (an Autoimmune Disease) which has caused my thyroid to dysfunction. The Autoimmune aspect of my illness has never been addressed by any of my 10 Endocrinologists. We patients who have Thyroid issues, which stem from an Autoimmune disorder, have been lumped in with patients who simply have Thyroid disorders. As a result, my "specialists" have had no information for me in terms of the importance of avoiding inflammation and avoiding certain foods, for example. In fact, until I started researching the Autoimmune aspect of my illness a few years ago, I had no idea about the devastating impact that Grave's disease can have on the entire body.

It is for this reason that I think I would be better served under an Autoimmune Specialist. I'm not talking about a doctor who treats patients for an ailment and that patient happens to have an Autoimmune Disorder. I want Autoimmune Disease to be the doctor's specialty--treating autoimmune disorders, only. Then, it would be even greater if the Autoimmune Disorder Specialist could have a sub specialty (i.e. an Autoimmune Specialists who specializes in Sarcoidosis or an Autoimmune Specialist who specializes in Lupus, for example).

Typically, Lupus patients, for example, are treated by Rheumatologists. Rheumatologists are doctors who specialize in Arthritis and other diseases of the joints, muscles, and bones. Wouldn't it be more beneficial for a Lupus patient to be treated by an Autoimmune Specialists who specializes in Lupus versus a Rheumatolgist who has an interest or extensive knowledge about Lupus? This type of specialization would potentially offer a better course of treatment for patients who are suffering from Autoimmune Disorders.

There are Clinical Immunologists out there. But, correct me if I'm wrong, these doctors seem to deal more with allergies and areas such as Asthma. I have an Allergist/Immunologist and his focus has been on trying to help me to get a handle on my food intolerances. When I've asked him questions about my Autoimmune Disorder in relation to my other issues, he hasn't had much for me.

What will it take? Good Autoimmune Specialists will not simply fall out of the sky. These specialists would need to receive extensive training, and they should be required to keep abreast of the latest research into specific Autoimmune Disorders. With this extensive training, they would be able to do more "outside-of-the- box" thinking. And, research should always include focus groups that are solely formed to receive information from Autoimmune Disorder patients. In dealing with Autoimmune Disorders, the textbook is not always adequate. To get the real, low down story, patient involvement is absolutely essential.

I hope that one day there will be specialists who can truly and fully understand the plight of a person with an Autoimmune Disease!

Perhaps I'm oblivious to the fact that there are Autoimmune Specialists out there. I have tried to find this type of doctor in my city, but I have been unsuccessful. If anyone has a good Autoimmune Specialist (not an alternative or holistic doctor, please), please let me know. I would greatly appreciate the referral!!!

_______________________________________________

After writing this post, I decided to Google: Autoimmne Specialists (I wanted to make sure I hadn't overlooked anything in my search). Unsurprisingly, I didn't quite find what I was looking for. However, below is an interesting article. The article was written in 2000, but, unfortunately, it doesn't seem that much progress has been made in terms of treating Autoimmune Diseases.


Title of Article: Autoimmune Diseases Poorly Understood, Difficult to Treat
http://archives.cnn.com/2000/HEALTH/07/04/autoimmune.disease.wmd/index.html

Advocate Speaks About Girl Who Claimed She Got Dystonia From the Flu Shot

Interesting commentary from Rogers Hartmann, an advocate in the fight for research into treating and curing Dystonia. She discusses the girl who claimed she was afflicted with Dystonia after receiving the Flu shot. View Hartmann's message at:



http://www.lifewithdystonia.com/2009/11/defining-dystonia-and-why-it-is-so.html

Recent Posts Written for blog, Illness and Life

Below are recent posts that I have written for the blog, Illness and Life.

Reflection: The Problem With Some Medical Professionals at:

http://vonneb.wordpress.com/2009/11/09/reflection-the-problem-with-some-medical-professionals-a-k-a-doctors/

Choosing To Be An Optimistic Realist at:

http://vonneb.wordpress.com/2009/11/01/choosing-to-be-an-optimistic-realist/

Response to Christy's Comment

Christy,

Thanks for the response about taking beta blockers. I appreciate your advice!

I believe that the Flexeril I'd been taking recently helped to increase my heart rate and possibly the anxiousness of being prepped for surgery had a role in the increased heart rate as well.

I also feel that my heart rate has gradually gotten better (although, obviously not perfect) since being off of Synthroid (I now take the Armour Thyroid).

True, that nasty Graves' Disease can cause the heart rate to increase as well.

I did visit with a Cardiologist last week. Of course, he noticed the Tachycardia and a heart murmur. He said that it's not something to be alarmed about, but I appreciate that he has me scheduled for a number of tests to make sure all bases are covered.

I appreciate your sharing your positive experience regarding taking beta blockers. If the Cardiologist feels I need them, then I will probably be a good girl and take them.

Thanks again,
ChyvonneB

Is it Dystonia or a Hoax?

Is the story about Desiree Jennings, the cheerleader who got Dystonia from the Flu Vaccination a hoax? There are stories circulating that this young woman does not actually have Dystonia.

Dystonia is a neurological disorder that causes muscles to contract involuntarily. Often, doctors are not able to pinpoint the exact cause of the disorder. This is true in the case of many neurological disorders and diseases such as Parkinson's Disease which is idiopathic in nature or does not have a determined origin.

Like Parkinson's Disease, it is speculated that Dystonia may be caused by genetics and/or environmental toxins that have assaulted the neurological system of people with the disorder. Currently, there is not a cure for either disorder.

There are many types of Dystonia. As in my case, the muscles in my neck contract involuntarily. For others, the eyes are affected. In some cases, the person's whole body is affected by the disorder. The commonality of the disorder is that there are spasms and pain involved in all cases. There are treatments options--including Botox injections, potent muscle relaxants, and an invasive brain surgery procedure (DBS)--that work for some and not for others.

I will be interested,in the days to come, to see whether or not this young lady has actually been stricken with Dystonia or not. If it turns out that Jennings has intentionally lied about having symptoms of Dystonia, it will be unfortunate for all of the people who have actually been stricken with this painful disorder.

We don't want to be exploited. We just want to bring awareness to this disorder in hopes of more funding for research and better treatment options.

Drug Induced Drowsiness: The Effects of Taking Flexeril

I started taking Flexeril, a strong muscle relaxant prescribed for the severe muscle spasms in my neck. The reason I don't like medicine is because I seem to be a magnet for side effects. I prayed that Flexeril would be different. But, there went that magnet again...My heart flutters even more and the medicine makes me extremely drowsy.

When I take it (one pill), I feel literally drugged for quite a while. When I take Flexeril, I always take it in the evening, because I know that I will be no good at all if I take it during the day. The next day I feel all tingly and sort of like I am there but not there. I don't like that feeling. It takes at least a day and a half to two days for it to wear off. Actually, I want to say that I still have it in my system even after two days.

My prescription says to take it three times a day. Boy, I would really feel like a zombie if I took it three times a day! So, I've been taking it at the height of spasms--when I can't take the discomfort of tightened neck muscles anymore. So, I've been taking it a few times a week (one pill per day; a few times a week).

The Flexeril helps to loosen the muscles in my neck a little. But, I can't seem to fully enjoy the effects, because I can't mentally focus due to the drug induced drowsiness. I've also noticed that the muscles in the front of my neck tighten up more once the Flexeril starts to wear off. I have no idea why that seems to be happening.

Also, I've noticed actual pain shooting up, occasionally, in my right arm and the left side of my neck. This used to be common (pain and spasms all over), but Botox shots have helped to cover the pain, to a certain extent, in these areas. I'm not sure if the reoccurring pain is because the effects from the last Botox shot are wearing off and I need another shot or if it's because the weather is becoming colder and rainier.

I am scheduled for another Botox shot during the middle of November. Hopefully, I will receive more relief for the constantly spasming right side of my neck. That would be wonderful.

I Received Help in Spreading the Word About Dystonia

"On this day, at least one more person knows about this rare disorder called Dystonia. And for that, I am thankful."

Yesterday, I commented on a young woman's (her name is Nieya) blog in which she mentioned the story about the woman who had developed Dystonia after receiving the Flu shot.

Nieya commented that when she first saw the video footage of the young woman moving strangely, her instinct was to laugh, because it looked like a prank or joke. As I read further, she stated that she now realizes that the woman has Dystonia and that she prays for her recovery.

After reading her blog entry, I wrote a brief message on Nieya's blog about my experiences with Cervical Dystonia. I stated that more people are slowly becoming aware of this cruel disorder due to this unfortunate "Flu shot" incident and through media coverage about the disorder that has been on shows such as The Doctors, The Oprah Winfrey Show, The Today Show, and a few others. I also mentioned that I hope more research and funding will be given to this disorder and similar disorders.

This morning, I got a nice surprise that literally put tears in my eyes. I have an alert on one of my email accounts that will alert me to certain topics such as Dystonia. So, this morning, Nieya's blog popped up as one of my alerts.

So, I downloaded her blog. As I started reading her most recent entry, I noticed that she wrote about my comment to her. She discussed how she had not been aware of Dystonia (most people have never heard of it). She also mentioned how she researched the disorder and she encouraged her readers to read my blog to learn more about Dystonia.

In addition, she wrote me a very touching message regarding my spirit and courage.

I responded to her with a very warm message. I was very moved by her empathy. I was also impressed and thankful for her willingness to appeal to others to educate themselves about this disorder. She even placed a Dystonia Ribbon on her blog. Thanks!

Woman Develops Dystonia After Receiving the Flu Shot

Is it possible to get Dystonia after receiving the Flu shot?

Anything is possible. In regards to the young woman who developed Dystonia throughout her body after receiving the flu shot, my thoughts and prayers go out to her and her family. She is obviously in a great deal of discomfort as Dystonia is a painful disorder that causes the muscles to spasm uncontrollably.

On one news show that I viewed, an ER doctor accused the young woman of having a psychogenic case of Dystonia or in other words, it's all in her head. Is this possible? Yes, there are many cases in which people have psychogenic illnesses. However, in viewing footage of this woman, I believe that she unfortunately has Dystonia.

On the same news program, the reporter who intereviewed the ER doctor about this case brought up a very valid point. He brought up the fact that there were cases of Guillain Barre Syndrome, an illness that affects the neurological system, that were directly associated with people receiving the Swine Flu Vaccination in the 1960's. All the good doctor could say is, "That's true."


It's funny how when something is inexplicable, doctors and people in general often try to label the person as a nut case. That's like saying, "You have symptoms of a cold, but we can't prove exactly why you have the symptoms of a cold. So, you could not possibly have a real cold." That's ridiculous!

Should people be afraid of receiving the Flu shot?
In my opinion, people should be leary of anything that they put into their bodies. However, as statistics state, this woman had a reaction that might affect one in a million people. With that being said, it's no different than the millions of children getting the MMR series of vaccinations and some of them becoming Autistic shortly after. While this is a controversial topic, it makes sense that some unlucky few will have a reaction to any substance.

I just wish that it were possible to determine individual health risks before taking these types of vaccinations. Although there is a way to test the function of the immune system before giving children the MMR series of vaccinations, the test is not widely administered by doctors.

While I have Cervical Dystonia which mainly affects my neck--which is painful and uncomfortable enough, I could not imagine having this disorder throughout the whole body. I pray that the Lord gives this woman great emotional strength, because she will need it. Although there is no cure for the disorder, I pray the Lord grants a miracle and heals this young lady.

Below is footage of the woman who developed Dystonia after receiving the Flu shot.

No Surgery For Me

I was due to have surgery on Friday. I went to the hospital yesterday (Wednesday) for my preadmission physical before undergoing surgery for a rectal mass. The doctors don't seem too concerned about it, but I was advised to get it out before it could potentially turn into something. The point of the preadmission physical was mainly to determine how I might react to the anesthesia during surgery.

During the physical, I saw a physician's assistant who did the basics like taking my blood pressure. Then, I saw someone who took my blood and performed the EKG. Then, the nurse came in and told me how to prepare for the surgery (i.e. my last meal, washing with bacterial soap the day before the procedure, etc). They were all very nice and personable.

The physician's assistant was very concerned about my rapid heart rate. Yesterday, my heart rate was 132. The highest that it has gotten to my knowledge is 150. The normal range for a heart rate, from my understanding, is 60 to 90 beats per minute.

I explained to him that I have Grave's Disease. "That shouldn't be why your heart rate is so fast," he said. His girlfriend has Grave's Disease, and she's on Synthroid and she's just fine (Everyone is an expert--LOL). I told him that I was glad for her, but I'm an unusual case and the poster child for side effects.

I have always been concerned about my rapid heart rate. On several occasions, I have been diagnosed with tachycardia (I always mispronounce that word). According to Webster's Dictionary, the definition of tachycardia is: an abnormally rapid heartbeat, caused by disease, medication, drugs, exercise, or emotional distress.

So, let's see: I have Grave's Disease (disease), I take thyroid medication (medication/drugs) and I've been taking a muscle relaxant (medication/drugs), and I was in the hospital--with spasms in my neck due to Dystonia-- a few days before a scheduled surgery(emotional distress). Hey, four out of five possibilites ain't bad.

The PA told me that I should be on a beta blocker, because it would help to slow my heart rate down. For years, I've been told that I need to be on one. However, one of the listed side effects on my last prescription for beta blockers--which I didn't take--said that it could cause the heart to stop. So, I figured that a fast heart rate would be better than none at all.

The PA did get me thinking, though. He informed me of a study that included 70,000 people. The conclusion of the study was that people who needed beta blockers and took beta blockers lived longer than those who did not take them. He also told me that I can't keep walking around with my heart beating so fast. Even though I've been resistant in the past, I'm thinking about going back to a cardiologist and having them prescribe the bb's for me. I will pray on it. Obviously, I hate medication and I hate side effects (i.e. drowsiness). So, we'll see...

As of this morning, I had not received a call telling me whether or not I would be approved for surgery. I prayed on it and talked to my husband and my mother. So, to make a long story shorter, I decided to cancel my procedure--before the decision was made for me. I simply did not feel comfortable being under anesthesia with my rapid heart rate.

And, by the way, I do greatly appreciate the PA's concern. He could've just given me the typical response, "It'll be okay. There's nothing to worry about." I'm so glad that he took the time to care.