Buckeye55@
Your Replies
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April 27, 2017 at 11:48 am
Thank you for your Reply BrianF
I pray you continue to see improvements!
God BlessApril 27, 2017 at 9:01 amI had two IVIG therapies and now insurance has revoked all further treatments due to Dr error in reporting. I saw significant changes after my second round. I am back to severe weakness in both legs. Left leg is much worse. I have severe pain in my left knee that feels like a burning/ tearing feeling when I stand and walk. Manual dexterity has gotten much worse. My Dr claims they are doing everything they can to resolve the issue. I never thought CIDP would get this bad! Does anyone else have these same symptoms ? I’m really afraid what the future holds if I can’t resume my IVIG therapies. I feel helpless and afraid. I look forward to any responses. Thank you to ALL and God Bless!
April 14, 2017 at 3:06 pmTom,
Your response was very helpful! Thank You ! God BlessApril 14, 2017 at 3:04 pmYes, they appear after IVIG and then Clear up. Thank you for your response ! God Bless
April 13, 2017 at 9:56 amTom,
Thank you all your experiences and the very informative response ! I greatly appreciate it. Do have or have you experienced sever knee joint pain ? Lower back pain? Plus a few days after IVIG I get what look like bites but itch so bad and then break open and bleed and then scan over which take several days to go away ? Once again thank you !
God BlessApril 12, 2017 at 4:27 pmBryan ,
I have had two rounds of IVIG thus far. My first round was late February and my second was in late March. They are 4 weeks apart. My third round begins April 24-27. Up to six treatments. I do NOT take daily doses of prednisone. I get injected before each IVIG. I go to my Neuro on April 24 to be evaluated and to see if she feels IVIG is working ? At this point after two rounds it is not. I appreciate your response.
Thank You!
God BlessApril 12, 2017 at 12:27 pmI have my IVIG every month. A series of four straight days once a month scheduled at this point to have 6 months.
Whoever may read this could they please respond if you experience any of these symptoms and have they gone away with IVIG infusion? The symptoms are: both feet are numb and I have sever pain in both knees. Severe twitching in both of my hamstrings that feel like a bad charlie horse is about to happen. I have sever pain in both of my hands and it is very difficult to pick things up, turn pages of the paper and typing this forum as well as hold a cup of coffee, I have spilt a few! ugh… I am also very dizzy/light headed or feel like I’m in a fog most of the time. Driving is very difficult because its hard to gauge how hard am I pressing on the break. I also have shortness of breath and pain in my chest. I am on Comiden ( spelling?) due to previous PE in January 2016. My Neuro said I had to go back on because IVIG thickens your blood and I am at a greater risk for blood clots? I also take 900 mg of Gabapetin twice daily for a seral nerve biopsy completed Dec. 20, 2016. I have had two series of treatments and there is no improvement thus far. In fact the chest pain and hand situation is worse daily. I was diagnosed January 8, 2017. I am exhausted at the end of my work day and on the weekends seems like all I want to do is sleep. I feel awful about this as I never want to do much with my wife and family. I went from being a very active guy to this…anyone ever stop all these meds and feel better?? I pray a lot of you will respond if you have similar experiences or am I just weird? Thank you to all take the time to respond!
