Flu Vaccine Caused Dystonia

Some of you will know that my health problems originated within 48 hours of having a flu vaccination. I'd suffered from a bug the week before so I probably shouldn't have been vaccinated. I have often wondered what part the vaccination had in my current state of health. My main problems revolve around movement, but I also have brain fog and some autonomic problems too.

I informally met with Byron Hyde ( he is a Canadian expert in ME (CFS http://www.nightingale.ca) back in May 2007 when he was here for a conference. I spent about an hour with him. He wasn't able to examine me, but he felt my movement disorder was dystonia. He also felt the flu vaccine may have been the cause. He wouldn't say if he thought I had ME or not as he was unable to examine me and do SPECT scans etc.

I tried to find out if there were any other cases of dystonia linked with the flu virus, but drew a blank. I found instances of people getting Guillian Barre Syndrome, but not Dystonia. Trying to get doctors to even think of a link with the flu jab isn't easy either, as they always want to assure their patients that it is completely safe. I also realised it could be circumstantial and may have had nothing to do with my health problems. But yesterday someone sent me the following link to a news story about a young woman who got Dystonia from a flu jab.

http://tinyurl.com/yg9dezy

Strangely I can walk backwards ok too. I can also run for a few metres before my legs become stiff and I come to a halt. This may have opened up a whole new area I need to investigate with my doctor. I was recently diagnosed with diabetes which may be a contributing factor to my illness.

Paul

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Permalink Reply by ramona on October 16, 2009 at 4:42pm: Paul,
There has been research that shows that some persons are predisposed (genetically) to develop dystonia. Some of these persons may go throughout their lifetime without ever showing symptoms; however, others will have symptoms triggered by various factors - accident (physical trauma), illness, stress (NOT saying that the dystonia is psychogenic, though!). In the case of this young woman, it is difficult to say (probably impossible to determine definitively) whether it was the flu shot, the illness after the flu shot, some medication given her at the ER, or other trigger, that caused the dystonia. Sadly, though, she (and you, too) are left with an irreversible illness to cope with. Dystonia is such a huge unknown in the medical community, but at least stories like this will help bring it to the forefront and, hopefully, help much more research to be done regarding causes.

Please let us know what your doc says.

Blessings
Ramona; ▶ Reply to This

Permalink Reply by Paul Winter on October 16, 2009 at 6:45pm: Hi Ramona,

I would agree it is difficult to be certain, which is one of the reasons why I have never really pushed it with my doctor. It is interesting though how this young woman's doctors have not been afraid to link it.

I also had a change of medication for my blood pressure at the time of my flu vaccination, which I initially blamed my symptoms on. Like this young woman, my symptoms started with a flu like illness. I gradually, over the course of a few weeks, noticed my muscles tightening when I was walking and speech problems. It has progressed from there and I now have problems in many parts of my body and something which may be a type of paroxysmal dyskinesias.

Myalgic Encephalomyelitis (known by the unfortunate name of Chronic Fatigue syndrome, as fatigue has very little to do with it) is known to cause movement disorders. Dr Byron Hyde, who has studied the many ME epidemics that have happened in the past 70 years, has found that movement disorders were often a feature of it. Myalgic Encephalomyelitis can also be triggered by vaccinations. There is new research suggesting a link with it and a retrovirus called the XMRV virus and there may soon be a test for it. I would be interested to know if the young woman in the video also has symptoms that are not explained by dystonia . It is possible that the flu vaccine triggered mE, which in turn triggered her dystonia. Who knows?

What this story may help me with is getting my doctor to see there is a possible link with the vaccine and getting him to consider dystonia as a possible diagnosis of my movement disorder. Getting rid of the psychogenic label would go a long way in helping me to get proper medical care. At the moment I am treated like I am a time waster and neurologists don't even bother to listen to me or do a thorough examination. I still think my dystonia is a symptom of something else as I have autonomic problems too. At least dystonia is medically recognised, Even having a partial diagnosis of my medical problems would help. I'll let you know how I get on.

Best Wishes,

Paul; ▶ Reply to This

Permalink Reply by ramona on October 16, 2009 at 7:06pm: Yep, I understand how frustrating the diagnostic journey can be... I also have quite a few autonomic "issues", but don't have the time or energy to look for links these days. Thankfully I do have a dystonia diagnosis, so I just go with that and am able to get some relief from meds and neurostimulation. What part of the US are you in? How many different MDS have you seen?
Blessings
Ramona; ▶ Reply to This

Permalink Reply by Paul Winter on October 16, 2009 at 7:31pm: I live in the UK Ramona. I have been seen by 5 neurologists including a neurologist at the top UK neurological hospital, The National Neurological Hospital in London. The National were of no help as they had already decided it was all in my head before they even saw me as I have too many symptoms. I was treated like I was wasting their time right from the start. I never saw the same neurologist at appointments. The consultant only spent about 10 minutes with me, the others were his registrars.

I have seen one more neurologist since the National, but they read my notes and were just as unsympathetic towards me. Once the National has said it is all in your head, the chances of finding a neurologist who will look at you objectively becomes near impossible.

This story may just give my doctor what he needs to get me listened too. He did a neurological examination on me a few months ago and found things wrong, but he didn't know what they fitted.

Best Wishes,

Paul; ▶ Reply to This

Permalink Reply by nursemate on October 18, 2009 at 12:57pm: Paul, I'm sorry to hear you're having such struggles with a diagnosis. I'm new to this dystonia thing, recently diagnosed. I've had symptoms for 9 years, so I can relate mildy to your frustration. I'm lucky in that no doctor has labeled mine as being "mentally" related. They've all just wanted to do surgery on my hand and arm- total of 4 now. After spending a lot of time reading posts from others, don't give up hope or lose faith. You WILL find the right physician that will be familiar with this horrible disease and will put you on the track to relief. Good Luck to you.
Liz; ▶ Reply to This

Permalink Reply by Lene on October 18, 2009 at 6:59pm: Just wondered if anyone saw this video...what do you think?

Here is a video, about a girl that got Dystonia after seasonal flu shot.

http://www.youtube.com/watch?v=E4MIm1mB7GM; ▶ Reply to This

Permalink Reply by Paul Winter on October 19, 2009 at 4:13am: I see see is now being accused of having psychogenic dystonia!

http://www.examiner.com/x-13791-Baltimore-Disease-Prevention-Examin...

I really feel for her. The doctor in this story claims there is no record of anyone ever getting dystonia from a flu shot, therefore it must all be in this poor woman's head. Of course this is probably the reaction of most doctors so they are unlikely to report it. Added to that, doctors, government and the big drug companies want everyone to believe that the flu jab is completely safe. it probably is for the majority of people, but to deny there are possible severe side effects, and then accuse someone of basically faking, it is wrong.

Paul; ▶ Reply to This

Permalink Reply by Lene on October 19, 2009 at 5:01am: I felt the same way Paul. She was healthy one day and then boom sick.... I think I heard the vaccines that were made cost the pharmaceutical companies billions dollars so of course they want you to get it and pay.

I know several people on this site had the same problems with 1st DX where the doctor thought it was in their head...I find that just wrong.

There are many who have died already from the vaccine...OH! but that is normal they say in a flu season... I heard an interesting report about the H1NI on 60 minutes tonight..In addition, Glen Beck on Fox had 2 doctors with opposite points of view with regard to the H1N1. Not even the doctors are sure.
A dozen children have died this past week alone....; ▶ Reply to This

Permalink Reply by beka on October 19, 2009 at 8:27am: Take a look at this video - on Television with Deborah Norville in the USA :

http://www.insideedition.com/news.aspx?storyId=3525

Some proof possibly ?

beka; ▶ Reply to This

Permalink Reply by Rebekah on October 19, 2009 at 12:14pm: They are calling her crazy in front of millions. These people are truly 'gonfle' like the french would say! It's beyond reason. Now is a good time for us all to stand up and say collectively that we won't take shoddy medical care anymore!

Can you imagine how pained she must be right now?

Not to mention how it is counterintuitive for the body to choose a movement disorder to expressed surpressed frustration when she works out like an athlete. I wish they would leave the psychiatry to the psychiatrists!!

I recently had a doc tell me he didn't care what the two psychiatrists (and a talk therapist, one of the psychiatrists being a neuro psyciatrist) had to say about my not having a psychogenic disorder.

I'm so over this whole thing. They need to grow up already and meet the challenges of their field!!; ▶ Reply to This

Permalink Reply by Paul Winter on October 19, 2009 at 12:25pm: Hi Rebekah,

She has published her contact details. I have tried contacting her but she hasn't replied. This is probably either due to the volume of enquiries she is having, or she doesn't feel comfortable speaking to a man of my age! You can find her details at the end of this article:

http://loudountimes.com/blogs/loudoun-lowdown/2009-10-13/loudoun-lo...

She may apreciate being contacted by someone who knows what it is like to be disbelieved.

Paul; ▶ Reply to This

Permalink Reply by Jenn on October 28, 2009 at 1:06pm: I contacted her also. No response. :P; ▶ Reply to This