With your attitude and apparent strength, you will both do well. Keep in touch. BobN
Hi, Sarah!
I've been told that my experience is quite atypical, but I'm submitting my reply anyway with the hopes of that it can contribute to the wide variety of ways of responding to IVIG-treatment.
I had a so-called sub-acute onset of CIDP (meaning that I lost close to all of my sensation in both legs and my ability to walk, get up from a sitting position, my balance, my strength and endurance in both my arms, lower back, finer muscles, my bowl-movements, my endurance when it came to my speech (my tongue and my yaw), my neck (experienced difficulties in holding my head "upright") etc. within the first 48-72 hours).
I was admitted to the neurologist four days after showing the first symptoms, and due to the fact that all tests initially came back negative I didn't receive my loading dose until the following week. My loading dose of 2g/kg was administered in 5 doses, one dose a day (meaning 5 days of treatment in total). I responded to IVIG immediately.
The first treatment resulted in me being able to wiggle my toes (2-3 days after completing my the treatment). With every treatment that followed, I regained sensation in a "previously completely numb area" (travelling from my toes upwards all the way up to my groin-area). Despite rapid sensory improvement, I didn't see any difference when it came to my loss of reflexes, strength and endurance in the same effected areas.
Now (approximately a year and a half after my initial loading dose) I've regained some of my reflexes, developed some strength, some endurance and almost full sensation in all effected areas. Initially I was taken to and from hospital in a wheel-chair, then I was given a cane, and now I'm walking without any assistance (NOTE: I still have a difficult time when trying to walking a "longer" distance).
The biggest difference in the speed in which my body seemed to be recovering, was noted when my doctors and I decided to:
1. shorten my treatment-window (meaning I started receiving my maintenance doses more often than before)
2. switch Ivig-brand (started with Privigen but then switched to Gamunex C)
3. following an thorough allergy/food-sensitivity and food-intolerance-screening, adjust my diet to remove all of (the otherwise very healthy!) foods that were identified as triggers, meaning foods that activate my immune system into launching a reaction that drasticly increase my levels of inflammation.
I'm keeping you, your fiancé and the boys in my prayers!
//Sarah
hi
this is never easy on you, the kidz or your fiance, but it will get better. it differs from patient to patient. i was in a wheel chair when i was diagnosed. i was devastated cause i couldnt do anything for my self. you know what was so funny wheni was diagnosed i was a smoker, and i had a caregiver looking after me so ever time i wanted to smoke she would put the sigarette in my mouth light it and let me have a grad while holding the sigarette. lol thinking back it was no joke but now i am more relaxed about it and now its funny.
i was on a 5 day ivig and when i was relesed i could walk with my walker and braces on my feet. i had to have intense fisio and occupational therapy. but your mind set must also change. i needed to learn how to walk and feel again. every 3 momths i had to go for a one day session of ivig. they work it out according to your weight or atleast thats how it worked with me. it's tiring but stick it out and eventually you will see the difference. it takes time dont expect it to happen overnight. i had a relapse after 3 years of cidp being in remission and then i got fibromaylgia and two months after that i was diagnosed with bi polar disorder type 2. if you keep the faith you will pull through. we actually hve a lot to live for, we just need a reminder now and then.
please feel free to chat to me when ever you need to. and keep fighting and inspiring your fiance to keep positive please. good luck