Reply To: Looking for answers- doctors making me feel like I am crazy

Anonymous
June 5, 2012 at 2:13 pm

Here’s my update: I went back to the doctor at HUP yesterday and he said he no longer believes I have GBS because my symptoms have continued to progress. Due to my 2 past positive ANA test (Antibody antinuclear antibody) he wanted me to retest so we can explore possibility of Lupus or some other autoimmune disease… possibly see a rheumatologist. He is also retesting for lymes disease among other previous diseases which they tested for in March… After pushing him to tell me what we would do if the test did not come back with other indicators, I asked him what the next step is. I specifically asked, if this is GBS (which I have all the symptoms for) is there still potential for me to get worse… possible full paralysis. He said no, that GBS symptoms stop progressing after 4 weeks, so this would be something else. I asked him if he was referring to CIPD… he looked surprised that I knew what it was… he said yes, possibly CIPD. I asked what the next step would be… he said then we would redo the EMG test (which was previously normal) and then do a Lumbar Puncture (spinal tap). I then asked about treatments… he had already told me earlier in the appointment “I will NOT prescribe IVIG or Plasmapheresis”. He said in regards to treatments… we will talk about that when we get to that point. He then told me many of the people he treated, 1 who he has been treating for 12 years, do not get treated… that they feel the treatments are worse then their symptoms. So, my questions to you all are: Has anyone else had a positive ANA test but still diagnosed with GBS or CIPD? Has anyone else had normal reflexes and normal EMG tests but still diagonesed with GBS or CIPD? Has anyone else’s doctor been adamantly opposed to perform a spinal tap or prescribe IVIG treatments? All replies are appreciated (by the way… I am waiting for test results to come back and then plan on getting more opinions from other recommended doctors)