Made it through the EMG and NCV with relative ease. The needle in the instep of my foot got my attention though.
Doc did not make a lot of comments to me. He had an intern observing, so it was pretty much technical doctor speak and hard for me to follow. I have a follow up consult next week, as he did the EMG last week and one of his staff administered the NCV today.
So here is a question. How do you prepare for your visit. I tend to listen to what is being said, but think of lots of questions after I leave. I always take my wife, as she often remembers things said that I miss. My experience has been that Docs are invariably managing their time, and tend to keep it as succinct as possible.
Any suggestions as to how you maximize your time with the Neuro would be appreciated.
I had an ER doctor one time tell me before a lumbar puncture that if I made it through an EMG I could do anything! So you sound like you are well on your way :) My #1 best advice is to make a list before your visit. I collected questions and also a list of symptoms. I have a wonderful neurologist and I hope the same for you so that you can address all of your questions. If you haven't already I would request an MRI of your cervical and lumbar spine, that really helped my diagnosis process. Not super fun to spend nearly two hours in a bangingly loud tube but it is worth it in the process! Good luck!
I hear people say a EMG hurts I have them done 3 times a year. I can not feel them from my knees down. With CIDP your nerves are like a broken wire they test the Milo of the nerves/casings of the wire that was the best way for me to understand it. Me and my wife did a lot of research on CIDP. Kelly is right IVIG is real bad for the kidneys. You have to have them tested at least every 3 months. I went thru IVIG for 18 months with little results just a little feeling in my fingers so me and my Nuro talked my CIDP is in remission to protect my kidneys we decided to stop IVIG my kidneys are in good shape and I want to keep them that way. It was a hard decision to make but from everything I have read and did the research I think it was best for me.
Thanks Kelly, I have started a list of questions that I would like specific answers to. I decided to categorize them under 3 topics, to keep me from being all over the board. The first is symptoms, and questions relating to symptoms I am experiencing. The 2 nd is test results, and questions related to interpretation. And lastly, diagnosis, and treatment going forward.
I feel sure many will be addressed while we speak, but I will have a reference to ensure that I don’t forget to ask anything.
I have also thought about using a small digital recorder, that I can refer back to. I wonder if the Neuro would have any problem with me recording our conversation?
I am disappointed that I did not keep better notes and records when I was so sick back in 2008. I do not want to make the same mistake again. My memory is not getting better with age. LoL.
Alan,you are correct the Emg was not that bad. Nuero even commented, at least with the CIDP, and the numbness, the EMG was not that painful. However, when the needle was inserted into my instep, that was not pleasant.
Thanks for your input. Any other suggestions are appreciated.
Charles
Had my follow up appointment today. There was significant demyelination and acute denervation in my feet. My arms do not seem to be affected at this time. Neuro wants to do 6 months of IVig. Will get a 5 day loading dose scheduled, hopefully getting started next week. Also scheduled a follow up visit in October to see how I am responding.
My Ivig experience in 2008 was pretty miserable, with headache and fever. I hope this time goes better. I am open to any suggestions on how to reduce the side effects of the infusions.
Thanks Dazed. I brought it up with my Dr. and he added some pre-meds to my rx. Hopefully, this will help with the headaches.
I spoke with the infusion center this morning, and they are waiting for approval from United Health Care.They could not tell me how long that could take, said it depends on whether they request additional info or not. I am hoping this does not turn out to be a drawn out process.
The day before infusion I always drink at least 8 glasses of water to make sure I am hydrated. Right before the infusion I take 2 tylenol and 2 benadryl (doctor recommended it) and knock on wood so far no headaches or fever. I also have a bag of saline with my infusion (IVIG). Hope this helps!
Making lemonade said:
Had my follow up appointment today. There was significant demyelination and acute denervation in my feet. My arms do not seem to be affected at this time. Neuro wants to do 6 months of IVig. Will get a 5 day loading dose scheduled, hopefully getting started next week. Also scheduled a follow up visit in October to see how I am responding.
My Ivig experience in 2008 was pretty miserable, with headache and fever. I hope this time goes better. I am open to any suggestions on how to reduce the side effects of the infusions.
I will definitely make sure that I hydrate prior to the infusions, Roland. I do not think that I drank enough last time. The Dr. also ordered benedryl and Solu medrol,so hopefully that will help.
Still no word on approval from UHC. I am off from work this week, and had hoped to have the infusions so that I would not have to take additional time off. Doesn't look like that is going to happen. Looks like next week might be the earliest to get it scheduled, if I get approval this week.
Anyone here had experience with United Health Care, and their approval process?