Hi - I'm very happy to have found this community

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.


Welcome Jeanne!

What treatment did you receive in June?

It certainly sounds like you may have CIDP. I say "may" because I know there are a lot of other nasty things out there. If a doctor is looking to confirm CIDP they may also need to do either a lumbar puncture to measure the protein levels in your spinal fluid, or a nerve biopsy to confirm demylenation.

Hi Jobe,
Thanks for your reply. I have had no treatment except for some gabopentin for nerve pain. In May I had burning pain, with back pain and facial and neck numbness in addition to leg and foot neuropathies, but not much weakness, and the dr said the threshold for treatment is weakness. I got better and felt great- about 90% perfect with a few residual tolerable symptoms like tingling once in awhile. I was fine until my first flare up and it’s been downhill since then. The various neurologists I’ve seen have all said that the lumbar puncture is just one diagnostic tool and not one has suggested I have one. I think because my GBS symptoms were so spot on and classic the diagnosis was made without the LP. I asked about Lyme and was tested for everything else under the sun like B12 deficiency. I’ll see what my new dr says after my EMG on Monday. But from what I’ve been reading, it sounds like CIDP. Right now it’s been hard psychologically as well as physically trying to keep up with work and life in general. Best to you.

Hi Dazed and Confused,

Thank you for your response. You may have misunderstood a little of my original post. The neurologist I WAS seeing did not see anything wrong with me after my original 2014 bout of Guillaine Barre and suggested I was having some "post guillaine barre" symptoms or something. I did not accept this so I proceeded to seek out further opinions. The neurologist I'm seeing now DOES believe it's CIDP (thankfully mild) and we are following up. I have also consulted my neurologist cousin who treats CIDP patients and who cares about me very much (he has not examined me but has copies of all my test results) and he and I have talked, and he reassured me that catching this early and treating with IVIG is the way to go to prevent further damage and hopefully heal. I have my EMG tomorrow with my NEW neuro-muscular doctor and will see what she recommends. I'll keep you posted.

Thanks again and good luck to you.