In late 2004 I got my last flu shot. I say my last, because I will NEVER get another after what happened next.

Shortly after getting the shot, my family and I went on vacation in Florida. I was sick with flu like symptoms the whole time. You know, fever, achiness, etc. I also had some tingling in the palms of my hands, which I was attributing to a fall on my bike. It really wasn’t the best vacation, and when we got home, it was practically Christmas. I was so tired, and felt so weak.

After the first of the year, I attended my karate school’s first class of the year. Now, I’d been going to the same school for over 3 years, I should have known better than to go to the first class of the year. It’s ALWAYS a killer. The next day, I was so sore I could barely walk upright. I held off on karate classes for a couple of days, and then went back for more (torture, that is). This class was different. I felt like I was moving in molasses. I couldn’t jump, I couldn’t run (as hard as I tried). It was awful. I was supposed to be the most senior person in that class, people were supposed to look up to me, but I was fumbling around like I weighed 500 lbs.

I let it go, and continued to go to class. But it only got worse. 3 weeks later, I was visibly limping. I figured it was time to visit the doctor. I saw my GP. She wasn’t overly concerned about the weakness and tingling, but more about the frequent migraines and she ordered an MRI. It came back normal. (I have a history of epilepsy and migraines, so normal is a huge relief.) She also recommended that if the tingling and numbness didn’t improve I see a neurologist. There were none in her group, so I was left on my own to find one. My first thought was to find the guy who treated me for seizures in my teens. I found that he had retired. The next step was to find a list of candidates in Austin. I started with a fairly large clinic in Austin, and chose the guy based on his photograph.

When I saw him, he immediately told me it was some sort of polyneuropathy, but he would have to do tests to find out which one, and how to treat it. His first course of action was to order a DNA analysis to determine if it was one of the hereditary neuropathies. It took 3 weeks to get the blood drawn and another six before the analysis was done. When he received the results, he called to tell me I had none of the *known* markers for hereditary neuropathies.

Ok, think about that for a minute. Known markers? If it’s not known, how do you know there are others?

Despite my confusion over this, he told me there was nothing he could do, and that it would probably progress slowly. At this I jumped. I was already limping and dropping my feet regularly. I was falling often. I could no longer run, jump, kick, or jog, and now walking was starting to look iffy. I was even having trouble opening jars and lifting my (then) 2 year old. I told him this. He was very audibly alarmed and told me to come in immediately.

When I got there the motor tests that he did showed I was MUCH weaker. I couldn’t even walk on my tiptoes. I couldn’t even STAND on my tiptoes.

He changed his diagnosis. He asked me if I’d been sick, or had a flu shot before these symptoms appeared. I confirmed both. He came back with “Guillian-Barre“. Now, I knew all about this syndrome, I’d been reading for weeks about nerve damage and neuropathies and possible causes. I nodded. He told me the course of action was to give me a weeks worth of IVIg. This involves sitting in a chair hooked to an IV for 8-10 hours per day.

After the first day of treatment, I was visibly better. My limp was better. I felt better. Over the next few weeks I got better, and then worse. I had to have a second round of IVIg. Six weeks after that, I was bad again. I switched doctors. The new doctor told me that he didn’t think it was your typical Guillian-Barre, that it came on too slowly, and was lasting too long. But he thought it was a related condition called CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). This is basically the same as Guillian-Barre, but in a more mild form, and chronic instead of acute. More than likely, I would be having battles with it for the rest of my life.

Both Guillian-Barre and CIDP are auto-immune disorders. They both cause a person’s immune system to attack the peripheral nerves (nerves other than spine and brain) and remove the myelin sheath surrounding and protecting the nerve. Think of it this way, if your nerves are like electrical wires, and the myelin is the plastic coating around them. If you run electricity through a wire that has been stripped of it’s coating, a portion of the electricity is lost to the air. Some of the noise makes it through, but it’s not full strength. This is exactly what happens to the signals your brain sends to demyelinated nerves. Part of it is lost to the surrounding tissues because the protective, insulation is gone.

The difference is, that Guillian-Barre often progresses extremely quickly (like in 4-5 days) and that it often causes respiratory complications that lead to breathing tubes and many many months of rehabilitation.

So, getting the flu shot in late 2004 not only gave me the flu (despite what the CDC says about that being impossible) it gave me the wonderful gift of lifelong nerve damage. Granted, if the first doctor hadn’t farted around for 8+ weeks, I might not have had permanent damage, but still, thanks for the warning!

The CDC does mention on thier website that Guillian-Barre is a possible side effect. But they down play the severity of the disease. On the other hand the CDC also says on their website that the flu shot should be had by people who are at high risk for complications from the flu. Those people are infants, the elderly, and those with compromised immune systems. Um, let’s see, that’s not your average 30 year old joe on the street.

It enrages me to hear commercials telling people that they MUST get a flu shot. Bullshit. It pisses me off that employers post signs around the office about Flu Shot 101, and I’m sure they didn’t mention the possibility of Guillian-Barre or other (more long term) auto-immune diseases. (I’ll have to find someone who went and see what they actually said).

I’ll also tell you that I’ve not had a flu shot since 2004, and I haven’t had the flu since then. My husband, who is mandated to get a flu shot by the military, gets the flu every year. In fact, he’s getting over it as I write this.

Bottom line, do your research. Make an informed decision about that immunization before you get it.

Oh and PS — seems that the new HPV vaccination, Guardasil, is causing Guillian-Barre symptoms as well. There have already been 8 deaths in the US related to the injection. Just something to think about.

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