Reply To: What blood tests have you done?

I was in hospital with CIDP, where comprehensive blood testing is done daily for most patients.  This is routine, because hospitals want to detect any complications as soon as possible, regardless of the principal diagnosis for the patient.  Common tests are Complete Blood Count (CBC) and Basic Metabolic Panel (BMP).  I don’t know what other tests were run.  

CIDP was diagnosed for me on the basis of its presentation and the spinal fluid test.  Blood tests didn’t have anything to do with my neuropathy.  As far as I know, no one was trying to identify the antibody responsible for the neuropathy.  When I developed blood clots as a side effect of being immobile, I was put on warfarin (a blood thinner).  Then a Prothrombin Time/International Normalized Ratio (PT/INR) test was required while I was on it.

Out of hospital, my neurologist wanted a blood test monthly to check for reactions to my medication, but that has been cut back to once every three months.

My advice is to leave the matter of blood tests up to your doctors.  They know what they need and you, likely, do not.

As for Centers of Excellence (CoE), it’s good if you have one, but not necessarily something to be concerned about if you do not.  The most important advantage is in the ability to resolve an uncertain diagnosis.  Neurologists with insufficient experience may have more difficulty with the differential diagnosis, because neuropathies are inherently difficult to diagnose.  But if your disorder is clearly CIDP, you should be able to get adequate treatment without a CoE.  Most CIDP and GBS patients are not treated at a CoE.

My hospital was not a CoE.  But I had two excellent and experienced neurologists who were able to diagnose my disorder without much difficulty, and the hospital had the equipment I needed and highly skilled apheresis nurses and other specialists to give me the treatment I needed.  My second neurologist came in as a consultant — I didn’t request a second opinion.

If your diagnosis and treatment isn’t working out, then you may need a second opinion, in which case seeking out a CoE could be advantageous if it is practical for you to do so.

I hope it all works out well for you.