I have just joined and have been perusing some of the prior posts and already am finding some answers to questions - sometimes scary ones I don't want to hear, sometimes I'm comforted!
My story - in May 2014, 3 weeks before I was supposed to leave for one month in Rome as a faculty coordinator for a study abroad program, my feet started tingling and my ankles felt funny/heavy. I had recently experienced similar tingling in both feet for about a day, so figured it would stop soon. After about 4 days the weird sensation had traveled up to my knees. My cousin is a neurologist, so I called him to see what he thought and if I should make an appointment locally after I got back from my trip. "No," he replied, "you need to be seen now!" He suspected Guillain-Barre, since I recently had an upper respiratory infection. I was fortunate to get an appointment that week, and after an MRI and other tests ruled out MS and such, the neurologist diagnosed me with mild GBS. An emg/nerve conduction study confirmed nerve damage consistent with GBS. I cancelled my trip, knowing I did not have the strength to keep up with the demands of organizing 35 students. The plane left without me, and although I was disappointed, I was thankful that I was still walking around and not paralyzed. Plus, I had the whole month of June to do whatever I wanted - I had nothing on my calendar! I spent a great summer recovering from my minor nerve damage. I applied for and was approved for another study tour in 2015 (12 days in Italy in May).
Long story short, I had what felt like a flare up of symptoms in early October which left me without feeling in my feet, followed by cold and pressure sensations, especially in my heels. A follow up EMG did not show nerve damage, and after more MRIs and blood tests, a [new] neurologist did not see any problems and told me I did not need to come back. I asked him about the possibility of CIDP, and he insisted I did not have it or any other disease, despite my having no reflexes, numbness and what I now call "squeeze and freeze" feelings in my feet and ankles and sporadic numbness in arms, hands, and face.
I had another longer, more severe flare up in January, as I sought out other neurologists. On March 3, I saw a neuro-muscular specialist and she suspects CIDP. Unlike my previous neurologist, she believes I do exhibit some weakness, and her tests with the vibrating fork and such showed reduction in feeling closer to my feet - no surprise there, since I can't feel them! She ordered bloodwork, and will perform another EMG next week.
In the meantime, I've been seeing an acupuncturist and am on a food sensitivity reduction diet (blech!). I was fascinated to find out in a post that digestion and enzymes and electrolytes can be affected by CIDP, because that's exactly what the acupuncture MD found in me, so I'm on supplements to help this. I also take B vitamins, alpha lipoic acid, magnesium, vitamin D3 and fish oils.
Thank you for listening, and for your help so far with info in these posts. I'm interested to see what treatment the new doctor will order once the EMG is done and will probably have some questions.
Best to everyone here as we seek answers and adjust to new challenges.
Jeanne