Reply To: Can someone assist me?

October 27, 2012 at 7:26 pm

I have requested Spinal Tap from both the Neurologist and the Infectious Disease doctor but the first hasn’t replied, and the second said “No”.   Reading other stories on here, I guess I don’t see a lot of correlation with my symptoms.  But I am also getting on top of this very quickly.  I don’t see much logic in waiting until I wake up one day paralyzed or blind.  Unfortunately the medical system doesn’t know what the word “Proactive” means, so any requests or suggestions that we continue to try and figure this out are met with an “I have better things to do” attitude from the doctor.

From what I am reading here, clean EMG’s and clean Neuroconductive tests are not normal for those with GBS.  So my clear tests would indicate no GBS? At least not yet.   Each week something new develops.  I can definitely sit here another 6 months and ignore the various symptoms, as my nerves continue to be affected by an unknown entity … or I can stay on top of this and annoy the heck out of doctors, and feel stupid when they tell me Im fine.  I don’t like either alternative.

Another problem is that I present very healthy.   I am 38 but am routinely accused of being 24.  I am tan (from being in Florida) and have taken really good care of myself including fitness, so my body looks healthy and strong.  My face looks young.  Despite their training and intelligence I cannot count the number of times doctors have made assumptions purely based on my countenance and youth.  Its frustrating.

I found the Cleveland Clinic here in south florida which is apparently a research hospital.  I have requested an appointment.  I may call Dr. Dyck and get that ball rolling too.  My biggest thing is that this is so mild.  Maybe if its medication-induced, it can occur at a severity much slower and more mild than other types.

One doctor told me Lumbar Puncture is risky and you run the risk of introducing bacteria to your Cerebral Spinal Fluid which could cause a lifetime of pain and illness.  Do you all agree?