FLU Season and Dystonia

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Permalink Reply by hopeful on November 3, 2009 at 1:53pm

WOW! Beka,
I thought if anyone would be on her side it would be all of us. Maybe she didn't get it from the flu shot. But it was john hopkins that said it was from the flu shot not her. They are the ones who diagnosed her w/ dystonia. Her movements don't make since. Well who's does. Mayo clinic states for their symptoms can occur w/specific action. For example,you may experience involuntary contractions in one leg when walking forward,but not when running forward or walking backwards. For you to say phsycogenic puts a knot in my stomach because it's coming from a dystonia support group. Lets hope she doesn't come to this site for support. I think all of us have been through hell and back w/ trying to get proper diagnosis. I have torsion dystonia effects my whole body. I'm 38yrs I walk on side of left foot & my right leg drags. No i can't walk backwards or run. But I also have a dystonia that supposidly only children get. Not true it is rare or is it? I was put in hospital 3xs seizure like attacks was told psycogenic had psyc evaluation which ruled that out found movement dr who diagnosed me w/ torsion dystonia. Am now seeing new movement disorder spec. closer to home who diagnosed me w/ idiopathic torsion dystonia. The physical part of this disorder is bad enough But doubt about our mental state is from drs or onlookers is uglier than the physical appereance of our disfigured bodies. I will not get the flu shot nor will I have my children get it. maybe there is something in the shot that sets dystonia off in some people. plus my brother was very ill from the flu shot years ago. I'm sure the shot is safe for the most part But w/ me having dystonia and a possible link between the two I won't risk it for my children. Of course they will say flu shot is safe but their are risk to everything. So sorry for your response towards Desiree Jennings..

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Permalink Reply by Thorns on November 4, 2009 at 8:23am

In all fairness Beka was just writing what Robert Bartholomew wrote, I'm one of those who doesn't get the flu shots and I rarely get sick even with a cold, I've been very lucky that way. I've only had the flu twice in the past 15 yrs. and it lasted only a few days and when I do get a cold it's only bad a few days and it's always a head cold rarely goes to my chest. My mother who is 82 doesn't get the flu shot either and no one else in my family does either we are a hardy bunch. I feel for the young woman in the video, her life has now changed forever just for doing the right thing. Thorns

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Permalink Reply by hopeful on November 4, 2009 at 11:03am

Beka says she trys to refrain from medical diagnoses,but in one paragraph she states (very suggestive of phsycogenic disorder and all experts opinions, she states have not examined her personaly. Were the neurologist in the er movement disorder neuro's that deal w/ dystonia? How are you beka our dystonia foundation being any less irresponsible in your statements? The comment (Jennings is now in the hands of anti-vaccine quaks) why do you call them quaks? They too , like us are on a mission due to personal experience w/ vaccines. As we are on a quest to find a cure and bring awarness to dystonia. I believe it was john hopkins that diagnosed her personally w/ dystonia I take that to be more sufficiently justified than those who are judging her by her video. Beka, would you still feel this way if the flu-shot was not involved in this case? Seems your more against the anti-vaccine group thats supporting her. We should be supporting her to. I do support her. And I was hoping she would join this support group so we could help her w/ her fight against dystonia. And if you ask me The Mayo clinics description for dystonia fits Jennings symptoms . Beka, I do feel you are a great person and have done numerous wonderful things for us all w/ dystonia. But I disagree w/ you on this subject.

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Permalink Reply by beka on November 5, 2009 at 10:53am

I dont deny that there is a risk to any drug or vaccine.
But do take a look at this video by Dr. Stephen Grill response to Jennings Case of Dystonia- the video and the post was sent to me, not written by me...In fact I question the flu vaccine this year as I had a terrible time with it.. sick for over a week after I got it before Halloween.

beka

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Permalink Reply by beka on November 5, 2009 at 11:00am

Please clarify this - How are you beka our dystonia foundation being any less irresponsible in your statements...I AM not the dystonia foundation...I happen to work in an ICU setting as a ICU rn and have already seen the toll the H1N1 flu has taken on several patients .. not a pretty picture...but most of nurses fought the mandatory vaccine order asmandated by NYS this year.
It is good to disagree as it brings out multiple points of views. If Ms. Jenning would like to join this Forum, by all mean everyone will help her thru this fight.

beka

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Permalink Reply by Paul Winter on November 6, 2009 at 7:14am

I know some people think that the fact Ms Jennings can walk backwards and even run but not move forwards freely is strange. But I have found these links. As you will see it isn't that uncommon:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1279701/

And this thread from the Dystonia Bulletin Board

http://www.dystonia-bb.org/forums/asd/posts/69524.html

Paul

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Permalink Reply by Joe on November 4, 2009 at 8:42am

I posted this on another dystonia BB:

The simple fact remains that doctors who have examined her have determined she has dystonia, probably acquired as a result of the vaccine. The doctors who have NOT examined her say it's "psychogenic"...it's all in her head.

Who is more credible? I certainly have no love loss for Fox News, I am not "anti-vaccine", I think Oswald killed Kennedy, and I really do think we landed on the moon...
...however, any thinking person has to, as a famous White House informant once declared, "follow the money." Who has the most to lose if this vaccine, which is undoubtedly going to earn its makers BILLIONS of dollars, is cast in any kind of negative light? How ethical is it for doctors to make a diagnosis based on a three minute YouTube clip? If I knew their names, I'd steer a wide berth..

Now, I think it's a safe bet to say that large numbers of people are most likely NOT going to develop dystonia as a result of receiving this vaccine. For the overwhelming majority the vaccine will be safe and relatively innocuous (no pun intended). What happened to Ms. Jennings was a one-in-a-million situation (not literally, of course)...it just so happens that her situation was devastating and is terribly sad.

What galls me is not the behavior of the anti-vaccine people, it's the statements made by those who are supposed to be on our side, raising the psychogenic "Sword of Damocles" over our collective heads yet again. Isn't it time we left the 19th century behind? Should we exacerbate this poor woman's situation by humiliating her in public? Yes, I believe she acquired dystonia as a result of the vaccine. By calling her symptoms "psychogenic", we in the dystonia community are taking a giant step backward and doing ourselves a terrible disservice. How many ignorant neurologists, after hearing her story, will believe us now? It is appalling to me how many people on this BB over the years have been told their dystonia was a psychiatric problem, only to receive the correct diagnosis, sometimes many years and dozens of doctors later.

I do not think we should panic...the vaccine is probably very safe. I also think,however, that just as a matter of human decency, we should take her and perhaps more importantly, the doctors who actually EXAMINED her, at their word.

Just ask yourself...honestly...if the administration of simple vaccine had wrought such overwhelming devastation...changed everything about your life, most likely permanently...wouldn't you be a little pissed? Do you think she's going to be very receptive to the "one-in-a-million" argument?... "and guess what, Desiree...you were the one?"

I say, just go get yourself vaccinated (or not) and leave the poor woman alone. I seriously doubt that Desiree Jennings or even a certain Hollywood power couple are going to make a dent in the number of doses of the vaccine administered...or the bottom lines of the companies who make the stuff. Let her have her anger...it may be the only thing keeping her going right now.

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Permalink Reply by beka on November 5, 2009 at 11:10am

Here are multiple links - post your thoughts and explanations about dystonia directly on these sites :

http://www.myfoxdc.com/dpp/health/102109_desiree_jennings_dystonia_...

http://scienceblogs.com/insolence/2009/11/dystonia_from_a_flu_vacci...

http://www.theness.com/neurologicablog/?p=1152 WELL WORTH THE READ along with the 55 comments or so.


beka

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Permalink Reply by hopeful on November 5, 2009 at 2:59pm

Sorry Beka I thought you felt it seemed phsycogenic. I so hate that word! The whole thing shes going through makes me so angry. Guess I was venting aimed at the wrong person. Please forgive me.
hopeful

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Permalink Reply by beka on November 5, 2009 at 5:28pm

I think all of us are angry.. at the word of psychogenic.. I know I was for 5 years before I self diagnosed myself..they all told me it was in my head... URGHH>>>
It's good to vent... I do wish we could tap into her but not a single person can get a hold of her...

No need to be asking for forgiveness... Just let me know how you are doing...
I want to hear as do others...
beka

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Permalink Reply by Thorns on November 5, 2009 at 5:48pm

It would be interesting if something like this person getting Dystonia from a flu shot has something to do with all of us getting Dystonia from some illness associated with the flu strain at some point in our lives. It would not apply to those who got Dystonia from an accident, but it's food for thought.
I still don't believe that Dystonia is psychogenic in anyone.
Thorns

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Permalink Reply by hopeful on November 9, 2009 at 10:15am

Have you read the article from roger hartmanns opinion of desiree jennings? www.wcnc.com/.../w. I want you to know I disagree w/ you completley. By the way when did you finish your degree as a movement disorder neurologist? I have dystonia and I don't even want to be associated w/ remarks in regards to desiree. What makes you a specialist? Just cause you've been on oprah. I am so saddened by all the attacks towards this women. I am heavily in doubt I want anything to do w/ dystonia foundation anymore. every attack to jennings feels like an attack towards my dystonia. how does anyone else feel about this. I don't want rogers to represnt me as a dystonia patient that agrees w/ her,because i don;t.

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