Reply To: New- CIPD and Central Nerves/ Cranial

July 24, 2019 at 1:02 pm

Strongly agree with August 8th post by Jim –
LA. Copious Neurologist only treat disease by textbook which in my case was damaging. Unfortunately their is a lack of Neurologists and in my case I was told first available appointment was 1 year and 2 months.
Highly recommended that before committing to a Neurologist you ask how many patients they have treated or do with CIDP. Does not stop there. Even I’d the Neurologist treats CIDP EACH HAS THEIR OWN BELIEFS AND TREATMENT PLAN. Many Neurologist ( or in one of my experiences, (the Doctor / Chief of Staff of the hospital) did not belief in Ivig, or plasma treatments , therefore I was on many different Rx , ( at the same time ) that did nothing for me . During that time my health declined as self continued to attack myelin and lost most muscle control. Point being every person different , it is a Must to have a Doctor who listens and communicates with you and understands the ever changing symptoms .
I by no means intend to attack the profession of Neurologist’s . They are learning as we are learning, which reflects in the increase of people diagnosed with rare autoimmune diseases.