Reply To: Exacerbation – scared

June 8, 2012 at 9:35 am

aww, thank yall so much.. I can’t tell yall how much I appreciate yalls support and advice!!! I only got a loading dose one time (when I was inpatient in the hospital) and it was only a 3 day loading dose at that (not sure of how many g/kg as It was all foreign to me at the time).

I dont’ feel 100% comfortable with the dr we see.. we are so thankful though I am an atypical case of CIDP that they did try the IVIG in the first place.. thankfully it worked and worked AMAZINGLY!

The further away I get from the loading dose, i defintely feel like it doesn’t work quite as well, though sometimes more than others.. ..
I feel like the dr we see is more of the old school “doctoring” and doesn’t like hearing recommendations from their patients.. though when I told them it was wearing off before the 3 week mark and having relapses they did respond to increasing it to every 2 weeks.. I am afraid to step on any toes I think.. as this dr at least did try the IVIG.. I know someone at the infusion center that went to get a 2nd opinion and they put her IVIG on hold due to her being an atypical case (also of CIDP).. I hear she is quickly declining and doing pretty badly since the IVIG.. SO, I think after hearing that I am extra afraid to “rock the boat”

I wish I could be with a dr that I felt more comfortable with.. but am scared to risk a change of diagnosis, revoking of the IVIG or anything that could make inurance wiggle it’s way out of paying for the IVIG!

I want to feel like I did after that 2nd IVIG all the time, which was almost back to my old self.. So, I think I will ask them if we could do another loading dose.. as I just hate teatering on the edge of major dysfunction!!

Yall are all right as far as seeing it as an investment in my life, families life etc.. it is just hard with being the bread winner/insurance holder, Mom, the one who cleans, cooks etc.. then I have a very demanding job on top of it all.. We dont’ have any family to help us, they are all out of state.. with a 14 month old and a 2 year old we are obviously busy!
My husband goes with me sometimes to the appointments.. honestly he doesn’t understand why I want him there, and it is kind of a fight to have him go with me- he just says he doesnt’ understand.. But I was alone at my first dr appointment who said that I may have ALS (1st dr before any emg).. and that was pretty awful experience.. ever since I hate going to any appointment alone!

Does heat bother anyone else?? I can just melt after showers it seems, and then if I am out in the sun, or if the sun is even shining through the window when it hits my affected areas it just tingles and burns like crazy!
Pat- I hear ya.. I have always been very active – surfing, hiking, mountain biking.. then I was pregnant for 4 years on and off and just getting back into running/jogging and excited to “get my body back” haha! who knew!!

limekat- I was also there once – barely able to brush my teeth.. coudln’t carry the kids at all, and even temporarily holding one would weigh me down so much I coudl’nt get my legs out from undernreath me to walk with the added weight! I am SOOO thankful IVIG Is working.. but I agree, there is room for improvement no doubt

Kelly- did Emily ever have pain behind her eye when she moved it?? I swear I have had one eye that lags a little since this all started.. and its almost like it can get pulled, it gets SOOO sore, it is really painful to move it when I have exacerbations! … she had swallowing difficulties as well right?? I would really like to do that type of loading doses.. I think I would feel like a new person!!!
Thanks again yall so much for your help!