While I can certainly understand why you may not want to see yet another Neuro and I’ve no idea how far you may have to travel to get to Shands, there IS MOST DEFINITELY something to be said for seeing a Neuro specialist at what sounds like a Tertiary center in FLA which is what Shands appears to be.
Your message didn’t say you were physically totally unable to get to Shands, just that you weren’t keen on going.
I don’t live in FLA so I can’t speak to the rep Shands may have.
I’ve no idea what your CIDP history involves nor how many Neuro’s you have seen re: your CIDP but I strongly encourage you to reconsider.
I also commend your current Neuro for recognizing his or her limits re: treatment plan options/responses along with a corresponding decision to re-direct you to perhaps someone with more experience/expertise in addressing/treating patients with CIDP and the sequela caused by/from CIDP.
Sadly, the sequelae from CIDP varies greatly. So does the degree of damage to the body it can cause.
Don’t forget other factors like Age, other conditions you also may have that may also be creating adverse impact as well.
CIDP effects can indeed be long term but that isn’t to say absolutely nothing can be done to help alleviate what you must deal with esp if there’s a chance to help you make your life more bearable/comfortable/enjoyable no matter the limitations you may have. This is esp true re: any negative sequelae you may already have.
Involvement at a Tertiary Center like Shands could well be a good thing to obtain a qualified Expert opinion. Your comment doesn’t ID how many “experts” you have already seen nor what they have suggested/recommended to you not to mention whatever response to same you have had.
Look up the name of the Shands Neuro your own MD suggests you go to see.
Call his/her office to find out how many CIDP patients he/she currently has and see if there’s any way to poss be allowed to speak to one of his other patients with CIDP.
Offer to be willing to have some of your key records sent to the specialist’s office for said MD to review.
Sadly, while there is No Magic Cure that can fix or reverse whatever damage you may already have, that isn’t to say there’s nothing at all that can be done or tried to try to improve upon the sequelae you personally have from your CIDP…
Should you choose to, ask the rec’d Neuro specialis/office t if he/she can take a look at your current Neuro’s records, tests included, that you or your current Neuro’s office can provide.
Ask if you can provide a synopsis of your own CIDP history and what your current issues are then ask if that is something this Neuro specialist thinks he/she can help you better address.
How far out are you (months vs years) from the CIDP onset?
How physically and emotionally impacted are you with Activities of Daily life in your home environment?
Provide a List of the specialists you have already seen + the PT/Rehab services you have had with dates (approx is OK).
Request the Specialist to review and then discuss with your current Neuro BEFORE you make any arrangements to get yourself to Shands so that you can make a more informed decision as to whether or not the trip to Shands is warranted.
In the end, the decision is YOURS to make.
Thinking of you with understanding from California…