My Journey

    • June 18, 2012 at 4:23 pm

      Hello! I am new to this forum, and am glad there is one! First I would like to say that I am praying for everyone on here that you all recover and stay strong. I am 24 yrs old, and was very very active before all of this. I was an athlete-basketball and track, musician-traveling and church, went to school, had a good job, exercised daily, hung out with friends, and just overall, had a healthy, balanced, independent life. About May 2011, I had pleurisy, which is inflammed lungs. No one knows how it came about, but it felt like I was wearing 20lbs of wet clothes on my back, and I could barely walk. I was given meds and recovered. Then I caught a summer cold around Aug., but was fine in a week or so. But in Sept., I noticed alot of weird things going on in my body. For a few days, my legs would be numb and tingling, but then go back to normal. The next few days, my hands would do the same, and then my back was in so much pain, with the pain being more along my spine. Then everything was normal again. I’ll never forget. Oct. 17th 2011, I was going to go to work like normal. But I could not move or speak. I only had feeling in my left hand, and I was able to text my mom to help me. Long story short, I spent almost 2 wks in the hospital. The docs said it was possible GBS b/c of the paralysis ascending, numbness, tingling, acute breathing issues, etc. But my spinal tap, bloodwork, MRIs were normal. The EMG was ok, but they said they may have to repeat it. They gave me IVIG, and that helped quickly bring back feeling in my upper body, but from the waist-down, everything was numb. My legs felt like rubber-chicken legs. After leaving the hospital, I did outpatient rehab and IVIG treatments from home. My neurologist at first said yes, this is GBS, and treated me as so. Now it is June 18th 2012, and I feel like I’m retreating back to where I started. Back in March 2012, the neurologist said this could be CIDP or Miller Fischer. I did more blood work and MRIs, and everything’s normal still. I don’t understand how I can have the symptoms but the tests are normal. Did anyone else experience this? Now my insurance won’t allow me to continue IVIG treatments because the neurologist cannot make a sure diagnosis. Why was I approved before but not now? There was a long discussion w/the neurologist about this, and he said without the test results pointing to GBS, CIDP, or Miller Fischer, he cannot make a true dx. Should I get another neurologist? He also wants to refer me to a pain specialist and rheumatologist. Does anyone think this would help? Often times I am bed-ridden because my legs are too weak and numb to do anything. I am experiencing severe pain as I type, but I must type to see if I can find a solution. But I have severe pain in my neck, back, legs, feet, hands, wrists, and not alot of pain in my arms (weird). Bottom line is, in the hospital and out, the docs say the symptoms point to either GBS or CIDP, but the tests don’t since they are normal. Someone please help me understand all of this and offer any advice. Thanks and God bless you all 🙂

    • June 18, 2012 at 5:17 pm

      I’m very sorry to read about your tough time. It seems your symptoms do resemble GBS or CIDP but it could also be other illnesses as well. There are SO many of them that present the same way. Your dr could diagnose you with “atypical CIDP” so your insurance company will continue to cover your treatments. If your diagnosis later changes it will be ok because MANY people are misdiagnosed.

      When the MRI’s were done, did they do them with & without contrast? MRI’s done with contrast will show inflammation.

      If you are near a Mayo clinic, I think it would be wise to call them to get an appointment. I (pretty much always) recommend Dr. Dyck at Mayo in Minnesota. My daughter has not seen him but I have researched him & I agree with his treatment protocol. There are people who post here who have seen him.

      There are also Centers of Excellence that the GBS/CIDP Foundation consider to be highly qualified hospitals to treat the 2 illnesses. You can find those on the home page for the foundation.


    • Anonymous
      June 18, 2012 at 11:12 pm

      If you are anywhere near New York City, I highly recommend Norman Latov, M.D. at the Peripheral Neuropathy Clinic at Weill Cornell Medical College in Manhattan.

    • June 21, 2012 at 5:03 pm

      Hello Emilys_mom, thanks for your response. I recently spoke with a family member who’s a doctor, and she worked at the Mayo clinic as well, and she recommends me to definitely see a Rheumatologist. I wish she was in NJ where I live, but she’s in D.C. She said the symptoms I described to her reflect a rheumatological disorder as well. When I was hospitalized, she came all the way from D.C. and immediately knew I had GBS, because she treated so many patients with it at the Mayo Clinic. She could offer advice to the docs, but couldn’t treat me as her own patient b/c she was out of jurisdiction. When I had the MRIs done, they did with and without contrast, and that was normal. I will check out the Centers of Excellence as well. Thanks so much!!!

      Hi Goodney, thank you for your recommendation. I will check him out!!