Age: 49.0
Sex: F
Vaccine: FLUN3
Symptoms: Demyelinating polyneuropathy, Depression, Dysstasia, Electromyogram abnormal, Fatigue
Clinical narrative: None at time of vaccine. My health prior to receiving the FLUMIST vaccination was excellent. I was then working as a housekeeper. This job required many hours of walking, climbing stairs, and bending, quite typical of this occupation. In short I was under no physical restraints. I received the FLUMIST vaccination on October 1, 2009. My symptoms first manifested themselves during the last week of October, 2009. I was experiencing numbness and tingling in both hands as well as stiffness in both arms. These symptoms became more persistent into the month of November, 2009. While at work I notice that I was occasionally stubbing my toes when I was walking. In early December 2009 I experienced a "pop" on the top of my left foot which led to a complete flopping of both feet, better known as "dropped foot". Pain and stiffness worsened not only in my arms and hands, but also in my legs. In late December 2009 having much difficulty walking, I saw my primary care physician (PCP) who then referred me to a musculoskeletal doctor for evaluation. The doctor ordered blood work, an EMG, chest x-ray, and a bone density scan. All tests were normal except for the EMG; a referral to a neurologist was then requested. By this time I quite frankly could not walk, so my husband purchased a walker on January 20, 2010. Additionally, he also installed a handicap toilet on January 23, 2010 since I could not get up on our existing toilet. Even with the additional height of the new toilet I still could not stand up without the help of my husband. By this time I was bedridden, staying in bed until my husband returned home from work. My husband actually had to come home early from work to lift me off the toilet and assist me back to my bed. I was bedridden from April 2010 to June 2010. After several weeks I finally got an appointment with a neurologist who ordered a battery of blood tests and a lumbar MRI, all tests proved normal. On my third visit to the neurologist the doctor had no idea what was causing my health issues and that I should seek another opinion. I then asked the doctor if I might have CIDP (prior to this last visit I was researching online and discovered my symptoms were consistent with patients with CIDP). The doctor stated to me that I did not have CIDP. Quite frankly I do not think she ever heard of this form of neuropathy. All the doctor did for me at this time was to refer me to a prosthetics and orthotics company who fitted me with a pair of AFO's in an attempt to help me walk. This was followed up with an appointment to physical therapy to help me walk with the AFO's. Due to severe fatigue, on the third visit to PT I was sent home not to return until my strength returned. Obviously this did not occur because on March 15, 2010 my husband had to purchase a wheelchair since I just could not walk. In early May 2010 not knowing what to do I went back to my PCP who then ordered an MRI on my skull, cervical and thoracic spine for evidence of nerve damage. All tests were negative, my PCP then referred me again to a physical therapist in an attempt to get me walking since the muscles in my hands, arms, and legs were atrophying. After 10 sessions there was no improvement. Bedridden and wheelchair bound I also could not step into my tub/shower. Consequently, my husband had to wheel me out onto the back porch to bathe me daily under the garden hose. On May 14, 2010 my husband had to take out the tub/shower and install a walk in handicap shower. Totally frustrated and depressed, I took it upon myself to research my symptoms online. At this time I felt sure I may have CIDP. I located a neurologist, who specialized in neuropathies specifically CIDP. After some weeks I finally got a referral from my PCP to see Dr. (a 5 hour drive from my home). On June 26, 2010 I saw Dr. and during the exam I was quickly diagnosed and was told I had CIDP. The doctor immediately started me on IVIG treatments and from July 2010 to December 2011 I received the treatments every 3-4 weeks. My response to these treatments was amazing. I noticed improvement within 24 hours of my first infusion. Currently I am able to walk short distances without help; however I cannot get down on my knees and then stand up. The pain and numbness in my extremities comes and goes on a daily basis. I cannot drive because my feet get numb which does not allow me to feel the pedals. On my last visit with Dr., December 2011, he examined my reflexes again and discovered I had regained most of my reflexes back in my arms, hands, and knees. However, I have zero nerve response in both feet below my ankles. Since there had been no significant further improvement we discussed the possibility that I may have leveled off. We agreed to stop the IVIG treatments to determine a maintenance schedule. So long as my autoimmune system did not start to fire up I could defer the IVIG treatments for longer intervals. As this letter is being written, January 23, 2012, my CIDP symptoms have started to return. I'm afraid I will be back at the infusion center soon to receive another IVIG treatment. I guess this chronic disease is in fact chronic. I only hope the treatment intervals will be longer than 3-4 weeks since the nurses at the infusion center are having a more difficult time finding a "good vein" to administer the IVIG. It goes without saying having CIDP has dramatically changed my life. Prior to October 2009 I was a vibrant 50 year old, enjoying my family, work, and life in general. Each day that I wake up I hope the pain is less and my mobility will be improved. The simplest of tasks is a burden and I have resigned to the fact that the future will be difficult at best. Quality of life not only for me but also for my husband who has been truly amazing with his love and support is and most likely will always be less than we wish it to be. As a final comment, I truly regret not being diagnosed for more than six months. Given my positive response to the IVIG treatments, if I had been diagnosed sooner I believe the damage to my affected nerves would have been minimal. Now it seems I may never regain nerve function in my feet. I only hope I'm wrong.