My “story” is well over 100 pages long. Here it is in a nutshell –
I was the picture of a healthy and active 30 year old – 3 kids, great marriage and had a job. Life was great. This all changed in March 2007.
I was hospitalized after vomiting for 5 days and unable to keep any liquids down. 4 days into my hospital stay, the doctors could not figure out why I was ill. An x-ray revealed possibly a uti. I was given an IV of Cipro (500mg). Soon enough, I could eat, yet I could not bare weight on my legs. We thought perhaps I was just too weak.
I was sent home within 12 hours with a rx for 500 mg of Cipro. I never questioned taking it. I still assumed I was too weak to walk, I was unable to get to the counter at the pharmacy and collapsed. My husband helped me back to the car.
The following day we found out it wasn’t a “suspected” uti but Campylobacter food poisoning and I was to continue taking my Cipro. Yet, my neurological symptoms increased. I had crawling sensations in my legs and feet, they were extremely cold & felt like electrical zapping in them. Plus, I could not sleep. I did a little bit of researching and read up on Guillain Barre Syndrome as it is related to Campylobacter. We insisted on seeing my doctor. She immediately referred me to a neurologist who concluded it was an atypical hit of Guillain Barre and I was treated for it.
Unfortunately, 2 months later, I was hit by another flare that was far worse that the initial symptoms. I was struggling with my legs and I continued to move myself, but my upper arms became very weak…soon my neck flopped, speech slurred & I struggled to breath. I was tingling from head to toe. This all happened within minutes. We immediately went to an ER where a doc said it was a panic attack. Hmmm…I was fine mentally when it happened but sure I was panicked at this point ! I never experienced anything like this in my life!
We saw numerous doctors over the following year or so. In all 13 providers, not including several during hospital visits. Not one doc could tell me what was happening but most of the traditional neurological doctors told me this was psychosomatic. Yes, I did see neuropsych’s! My symptoms seemed like the were at there worst at about 6 months into my ordeal – muscle weakness, brain fog, fatigue, vomiting (weak digestion) to name a few. I never struggled with pain, and feel terribly for those who do.
At one point I had floaters – severely – almost like watery bubbles floating in my vision. It was then that I did some serious research on Cipro and found this is a common symptoms. I couldn’t believe it!
We did talk to our regular provider about this and she said she thought that the Cipro could have been an issue but passed me onto the neurologist! No, she wouldn’t take the fault!
Someone once made the comment, “Well, if they hadn’t put you on Cipro, you would have died from the severity of your food poisoning!”…hmmmm…dying after 30 wonderful years?? Or struggling with muscle weakness daily for possibly the rest of my life – which feels like hell at times….did we make the right choice?!
I have lost my job, many relationships as people don’t understand, and am considered disabled. It really has taken a toll on my family.
The most improvement has been help with naturopaths and environmental doctors. I have two great recommendations for anyone in WA State. But to be honest I have become my own best doctor. I am constantly experimenting with vitamins, supplements, lifestyle, and dietary changes. I have discovered foods and chemicals that flare up my symptoms and try to avoid them.
3 doctors, including a neuropsychiatrist have diagnosed this as Myasthenia Gravis although I am sero-negative. I do have 2 docs who are 100% sure the Cipro did this to me. The only thing I test positive for has been low potassium and anemia.
It has now been over 4 years since this began I like to think I am getting better, perhaps I‘m use to it? More in tune to my body? My flare ups cycle but my leg weakness is a daily occurrence. The tingling has dissipated except during PMS. I am constantly fatigued. I rarely have problems with my neck weakness & my speech slurring. I can’t say if it’s just time, but I’m pretty sure it’s the supplements I am on. I keep a detailed journal. I have learned a lot about my body through it – what helps & what triggers me symptoms.
This picture is during a flare. It literally sucks the life out of my face. I didn’t understand what my family meant when they said this until I saw this photo!