Registered: Jun 2001
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Posts: 5

I recieved a flu shot in November of 99 and as a result I had an autoimmune response that came in the form of damaged sensory nerves. My neurolgist (s) diagnosed this as post-vaccine neuropathy. Although this has improved a great deal over the last 16 months, I still experience pain in my face, arms and feet. I was wondering if anyone else had this type of response and if so, how long was the healing process? My neurologist told me it could take 2-3 years for all of my nerves to heal. Although, he does not seem all that interested. He told me I should consider myself lucky that I did not end up on a ventilator. Has anyone else experienced this type of reaction. If so, how long did it take you to recover?

Registered: Jun 2001
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Posts: 5

Well, I have been to 3 different neurologists in the past 18 months. After a bunch of tests, they diagnosed me based upon my symptoms and the time range in which my reactions happened. I received the first flu shot I have ever received on November 19th of 1999. On November 26th, a week later, I woke up in the morning and my face was burning. I figured it was from some new face wash I started using. By the next day, the burning got way more intense and I noticed it in my arms and hands too. I called my doctor over the weekend and they thought it could be shingles and as such, they put me on some medicine. By the time the weekend was over, it spread all over my body and the burning got much worse. This is when the testing started, I had a bunch of blood tests and they could not find anything. It took the doctors...allergists, GPs and dermatologists a total of 7 weeks to figure out what the problem was. By that time, it was too late to treat. I was diagnosed with GBS. Only, I did not experience any paralysis...only extreme pain. My neurologists filled out a Vaccine Reaction Report with the CDC. By the time they caught this, it was too late to treat me with either plasmapheresis or IVIG. So, this has been an up hill battle for me for the last year and a 1/2. I have had emg tests but they don't show damage to small sensory nerve fibers (which is where the bulk of my damage was). They were just run to rule things out. So, if that is what your neurologists are saying, I would get another opinion. I would suggest talking to the National Vaccination Group and filing a report. Have you done that? Basically it takes a week to develop antibodies from a vaccination. Since it was exactly a week when the damage started, there was no doubt in my neurologists mind that the antibodies from the flu vaccination attacked my nerves and caused damage.

Registered: Jun 2001
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Posts: 5

They didn't want to do a spinal tap as they diagnosed it from my symptoms. They did not feel a need to put me through any more tests. My doctor now calls this GBS..he specializes in it. The 1st doctor I had called it post vaccine neuropathy. I take a drug called neurontin. It cuts the pain a bit. I am a lot better than I was when it first occured. On a scale of 1-10, 10 being the worst pain, I would say that the pain varies between a 1 and a 3 now. It kinda of runs in cylces. Sometimes I experience a flare up for a few weeks and the pain is bad and other times I can barely feel it. I would say the biggest problem I have had is with depression. This whole thing has been a long process. The longer it lasts, the harder it is to deal with..... However, I have noticed that staying calm helps lots. Anxiety only makes autoimmune responses worse. I know a gentleman who had a reaction like ours to a flu shot in December of this year. His response happened as quickly as yours --within a day. So, I wouldn't rule out the vaccination. If there is one thing that I have learned , it is that everyone's body is different. Repair time is different, response is different and recovery time is different. You know your own body better than anyone. If you think the vaccination did this to you , you are probably right. Sounds like the docs do have you on meds to treat it though and you are getting some releif. Hang in there.

Registered: Jun 2001
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Posts: 5

I really don't like the side effects that I get from those antidepressents, especially the SSRIs, so I just opt not to take them. My support system is my boyfreind who has stuck through this with me from the start and my mom along with the rest of my family. In addition, I consulted a Pain Management Clinic and they have been teaching me biofeedback and relaxation techniques that help. I am in the processing of filing a law suit but don't know how far I will get with it. I do have numbness. When this first happened, I lost all feeling in my feet and my muscles were weak. Now, I have gotten back most of the feeling in my feet along with some pain. I have feeling everywhere but it doesn't feel accurate. When I touch my leg I can feel it but it's not exact..like I'm not sure which part of my leg I'm touching (other than I can see it with my eyes). Every once and a while I feel like my feet are swollen but nothing else. The burning is the worst on my face and my arms.Yes, it moves around. One minute it is there and the next ..it is gone. Overall I have a general feeling of soreness in my skin on my face..like a sunburn when it is healing only it never heals....kinda weird. If you are not satisfied, go to see another doctor..because some of them are that incompetent. Some of them are honest and will tell you that they just don't know. Above all, hang in there. Because you gotta deal with whatever comes your way..whether you like it or not