I have an appt Monday at the University of Penn center of excellence!!!!!!!!!!!!!!!!!!!!!!!!!!!!
SOOOOOOOOOOOOOOOOOO EXCITED!!
Original appt was for April, I kept calling then got in for Dec, got a call Friday afternoon for a first thing Monday appt!!
I have ALL my past medical info and my Immunologist,Hemo/Onco are both at Penn, so they can all keep tabs on my HOPEFUL progress.
So...my question is.............What do I ask?? I have all the basic questions I think. Ive had CIDP since Nov 2010, very mild slow onset that stayed same til June 2012. Forearms and lower legs went numb out of the blue. Started IVIG in Aug...honestly dont see any improvement. I also have autoimmune deficency...low IGG & IGA.
If anyone has helpful ideas for me as far as questions to ask or other treatments etc.....PLEASE PLEASE COMMENT AWAY~~
Make sure you ask about the possibiltiy of having POEMS syndrome. I was diagnosed with CIDP by two different neurologists. I started IVIG two months ago with my symptoms continuing to get worse. I subsequently decided to go to the MAYO clinic and they found a bone lesion that is malignant. I am going to start radiation on Monday. Not to say that you have POEMS or a bone lesion like myself but 70% of the people with POEMS are initially misdiagnosed with CIDP. Good luck.
When I first started IVig in Feb. it immediately helped with my balance control, it didn't make it perfect but I can navigate without a cane. The numbness and tingling in my extremities remains ever present but it has not progressed to a point of debilitation. I would ask your provider if they have a clear treatment plan( physical therapy, pain management, counseling,etc) I would also ask if their office has someone who can help with insurance coverage questions. When you are dealing with all this "stuff" insurance can be overwhelming. Also important to me is remembering what was said at my appointment. Take notes and if it is still unclear ask for copies of the chart notes or clarification from your doctor. Good luck I have an appointment next Monday and hopefully will follow my own advice.
thank you, I have a list 23 questions so far!!! I know I have a Primary IgA deficency and low IgG as well. So in my opinion this is what caused my body to be unable to react to whatever attacked my nerves. Therefore now I have CIDP.
My goal is to find out how to get to the root of the IgA problem. Bone Marrow I believe is where it stems.
So, lots of questions already...whatever he cant answer, I will seek info from my immunologist.
I live in Olympia,WA my neurologist confers with a friend of hers who is a neurologist at Harvard. I have noticed there are so many of us who have more than one medical ailment, I don't think the doctors communicate enough so for now it is important for us to remind them to do so thereby not complicating or voiding treatment plans. Sometimes I feel like a vessel trying to connect the dots. Just know that you are not alone and there seem to be an abundance of us who are willing to be here for you.
GonnaGetBetter said:
thank you, I have a list 23 questions so far!!! I know I have a Primary IgA deficency and low IgG as well. So in my opinion this is what caused my body to be unable to react to whatever attacked my nerves. Therefore now I have CIDP.
My goal is to find out how to get to the root of the IgA problem. Bone Marrow I believe is where it stems.
So, lots of questions already...whatever he cant answer, I will seek info from my immunologist.
Ask all diagnosis, coordinated treatment plan and next step if original plan does not work. I am having Stem Cell Transplant. Is that an option for you? Most neuros are against it at first. Don’t let that stop you if is an option.
God bless & wishing you great success with your appointment. I hope the Neurology Group @ PENN (is that the group your seeing?) can give you all the answers you are seeking as well as formulate a treatment plan which will help you get well.
My positive thoughts (as will those of orhers, Im sure), will be with you today! Continued success on your quest for answers
So, the Dr was sick and my appt is now at the end of the month. In the meantime, I spoke with the NP at my hemo/onco office. She says my labs are great from an onco standpoint and my inflammatory markers do not add up to CIDP. She says she knows she is not a neuro but something just does not look right to her. I’ve also researched IgA deficiency and primary autoimmune. Seems celiac or gluten allergy can cause IgA levels to drop!!! Im asking Immunologist to do a serology panel. IM SO LOST AND DESPERATE FOR ANSWERS. I JUST WANT MY LIFE BACK. :-/
You must be so frustrated, not having a clear answer is the most difficult place to be. It took me almost 2 months of constant testing to rule out everything else before getting the CIDP dx, and that seemed like forever to me. I believe you will find some of your answers if not all, in the meantime we are all here for you to make you feel a little less lost. Peace
I am so happy to hear you are feeling positive with your new doctor, it makes a huge difference. I saw my neurologist on Monday and I absolutely love her. My EMG testing was the first test to indicate CIDP, then I had multiple blood tests to confirm it.I am very uninformed on the varieties of CIDP and IVIG I look forward to hearing about your journey.
GonnaGetBetter said:
So,I had my appt with Dr Brown at Penn's center of excellence. I jumped the gun and shoed up a day early!! LOL
The Dr did see me, but did not review my case since he was expecting to see me tomorrow! So after a 45 minutes talk and quick exam I got 2 answers~
I seem to have a rare form of CIDP.....Sensory
My IVIG dose is not correct, therefore the reason Im seeing no result.
I go for an EMG in 2 weeks done by the docotr, at that time he will have gone over my records and be able to further help me!
I am happy to have found a Doctor who seems to have a good grasp on this disease and can hopefully get me started in the right direction!
What test did they use to dx sensory CIDP? Stay Strong Peace Nancy
nancy said:
I am so happy to hear you are feeling positive with your new doctor, it makes a huge difference. I saw my neurologist on Monday and I absolutely love her. My EMG testing was the first test to indicate CIDP, then I had multiple blood tests to confirm it.I am very uninformed on the varieties of CIDP and IVIG I look forward to hearing about your journey.
GonnaGetBetter said:
So,I had my appt with Dr Brown at Penn's center of excellence. I jumped the gun and shoed up a day early!! LOL
The Dr did see me, but did not review my case since he was expecting to see me tomorrow! So after a 45 minutes talk and quick exam I got 2 answers~
I seem to have a rare form of CIDP.....Sensory
My IVIG dose is not correct, therefore the reason Im seeing no result.
I go for an EMG in 2 weeks done by the docotr, at that time he will have gone over my records and be able to further help me!
I am happy to have found a Doctor who seems to have a good grasp on this disease and can hopefully get me started in the right direction!
