I finally got a referral to see a new neurologist after meeting someone at a GBS meeting with similar symptoms as me who had been diagnosed by him. He believes that I may have had the Miller Fisher Variant caused by the Tdap vaccine that I received prior. It was so great to finally have someone listen and understand and work with me for the future. I got pretty discouraged early on when I had a couple bad experiences with doctors who dismissed my symptoms as anxiety or made up. Through great physical therapy and the support of family and friends, I continued to recover while trying to search for a better neurologist. I failed a few times and it got me down. It’s pricey and it’s hard to take. It was when I decided to get rid of the negative and turn to the positive that I finally succeeded. So at almost 2 & 1/2 years out, I am finally getting the support that I needed so desperately before and could use with reflares now. Lucky for me, that my case was not so severe that I could do it without the help of a neurologist. I did find a better primary and that made a world of difference. I can’t undo the past but I am thankful now. So, to those of you in that situation, there is hope!
Hi Tarhealing, that is wonderful news! If you would like to share the name of the physician you saw/where they are located, we might be able to help someone in a similar situation!