Center of Excellence appointment tomorrow

A stroke of luck that I got an appointment. The scheduling nurse said to bring all my records. I do not have all of them! It is difficult to get some docs to provide a copy of anything. Why is this a challenge when I am paying their fee? I equate it to having your records for service on your car. I will not pay until
I receive a detailed breakdown of the charges and I keep copies of everything.

I am nervous about the appointment. Will I be able to articulate my pain and frustration? I am mentally fatigued and find it easy to go off track. My husband is attending the appointment. This means he takes time off without pay. Finances are beyond tight being on SSDI.

The lack of movement is hard for me to digest. I could not walk the grocery store yesterday. Today at church I did not use my cane and had a hard time with balance and stiffness. I count my steps unconsciously. Now I am laying down with a heat pad on the sorest part of my leg. I actually need a heat pad for the entire leg.

My original neuro is still fighting for me to have the genetic test that cost $2,700. I have not found one blog referencing this test. I find that odd??

Any tips on how to construct my medical records please let me know. I have filled out medical request forms in the past but never sure if they made it to the recipient.

Hope you all are doing a wee hit better with warmer temps!

Good luck. I hope all goes well for you.

hi Muppet,

firstly,i am glad there are definitely 2 of us muppets-at least-out there.

I do not know if the moderator will allow this but i am going for waldorf.

In the UK we are so lucky not to have many of these money worries as the NHS is funded by taxation and is free at the point of need.Those of us in the UK need to recognise how lucky we are.

I had the genetic test which ended up a waste of time but my neurologist,bless him,likes to use patients with active symptoms as teaching tools about thorough diagnosis.He made me try and dance with him when I could hardly stand,in front of his team of students.I told him use me for research purposes whenever you like.I've hit 60 now so nothing to prove.

I have been maintained by the NHS on the NHS for over 6 years with IVIG every 4 weeks.I am so grateful but want you to have the same.It is a fundamental human right.

We must make our voices heard.

Dear Muppet,

The most important records you need to bring to validate your CIDP diagnosis is any test results that support the diagnosis--EMG tests you have had, your MRI results, any clinical notes you can get from your Neurologist, and the results of your spinal tap, if they did one, to check for protein in your spinal fluid. Also, a list of any other medical conditions you have with any documentation from your regular medical physician (primary medical doctor-PMD). Genetic tests are important if any other people in your family also display signs/symptoms like yours--if you have anyone in your family with symptoms like yourself, it might be helpful to add this information into the discussion with the physician during your history and physical at the center.

Beforehand, do yourself a a favor and write down your list of medication names, dosages, and times of day that you take them. Also, write yourself down brief notes of your chief complaints so you will remember them when you get into the doctor's office. If you're having anxiety already about forgetting your major symptoms, chances are you will forget when you get in front of the doctor, and when you leave the appointment you'll want to kick yourself when your chief complaints come flooding back into your mind (and mouth!) and you'll be saying "why didn't I tell him/her this/that?!" all the way home!

Since you have finally landed an appointment with a "center of excellence" hopefully the physician you see will lead you along during the exam with questions that will prompt you to be able to describe the full array of the symptoms that cause the most challenges to you living your life and most affect the quality of your life. I hope you get some help and satisfaction from this important appointment.